Shows
AiArthritis Voices 360 Talk ShowEp 111 - Breaking AiArthritis Disease Research Update - EULAR 2025AiArthritis is bringing you along for the journey as part of our Go With Us! Program, this time straight from the EULAR 2025 in Barcelona. In this episode, we’re spotlighting key research updates that matter most to patients living with AiArthritis diseases.
Our 'co hosts, Leila, Tiffany, Deb, and Eileen, are on the ground at EULAR, reporting back with fresh insights into patient-prioritized topics. You’ll hear how nutrition and microbiome research is shifting how we understand inflammation and autoimmune risk, why CAR T-cell therapy is creating buzz as a potential path to long-term remission, and what new...2025-07-0646 min
eanCast: Weekly NeurologyEp. 134: Recognizing autoinflammatory syndromes as a neurologistModerator: João Moura (Porto, Portugal)
Guest: Jeroen Kerstens (Edegem, Belgium)
In this episode João Moura and Jeroen Kerstens focus on autoinflammatory syndromes. They discuss how to diagnose them and how they differ from autoimmune disorders, highlig
Moderator: João Moura (Porto, Portugal)Guest: Jeroen Kerstens (Edegem, Belgium)In this episode João Moura and Jeroen Kerstens focus on autoinflammatory syndromes. They discuss how to diagnose them and how they differ from autoimmune disorders, highlighting that autoinflammatory syndromes often present neurological features, and targeted treatment may prevent irreversible organ damage. Please find the article ment...2025-02-1020 minAiArthritis Voices 360 Talk ShowEp 106: Undifferentiated Disease - What is it & How Could a Diagnosis Affect Me?What does it mean to be diagnosed with undifferentiated disease (UD)? In this episode, Tiffany Westrich-Robertson, AiArthritis CEO and founder, unpacks this complex diagnosis, sharing her personal journey from being a mystery patient to receiving a UCTD diagnosis. Tiffany explains how undifferentiated disease fits into the autoimmune.autoinflammatory spectrum, its implications for treatment, and why early intervention is critical.
Join us on this episode to explore what undifferentiated disease means, how early treatment can improve outcomes, and the latest research shaping diagnosis and care.
Tell us YOUR undifferentiated disease story: https://bit.ly/3EfuWsT
Check out...2025-02-0222 minAiArthritis Voices 360 Talk ShowEp 101: "Go With Us!" to EULAR 2024In this episode, our co-hosts bring you an exclusive look into the AiArthritis “Go With Us!” to Conferences program. We dive deep into EULAR 2024, the European Rheumatology Research Conference, where patients and co-hosts reveal groundbreaking advancements in AiArthritis research. Discover the latest on CAR-T therapy, innovative pain management tailored for patients, the role of opioids in addressing pain and fatigue, and practical strategies for battling brain fog. Gain valuable insights and practical advice from fellow patients and experts. Don't miss this episode packed with cutting-edge information!
If you're eager for more, join us for our next...2024-09-0149 minAiArthritis Voices 360 Talk Show100th Episode: AiArthritis Voices 360 Highlights!Welcome to a milestone episode of AiArthritis Voices 360 Talk Show! Join us as we celebrate our 100th episode by revisiting three of our most impactful discussions that have resonated deeply with our listeners.
Episode 73: "Arthritis" Awareness - It’s Complicated! Dive into the complexities of arthritis awareness with our co-hosts as they share personal stories of delayed diagnosis and the profound impact it had on their lives. Discover why education and awareness for AiArthritis diseases are crucial in transforming patient journeys.
Episode 80/81: RheumyRounds: The Good, The Bad, and The Ugly - Improving Office Visit Communication In...2024-08-0442 minAiArthritis Voices 360 Talk ShowEp 98: Mental Health with AiArthritis DiseasesIn this episode, our co-hosts Estela and Juana delve deep into the often overlooked but critically important topic of mental health for those living with AiArthritis diseases. They discuss the significant impact these health challenges have on both the body and the mind, supported by eye-opening statistics that 52% of patients with autoimmune diseases are diagnosed with a mental health condition within a year. Tune in to hear Estela and Juana break down the science behind these connections, share their personal experiences and provide practical strategies to manage mental health while navigating life with AiArthritis diseases.
E...2024-06-0246 minAiArthritis Voices 360 Talk ShowEp 97: World AiArthritis DayIn this episode, Leila shares the exciting plans for the upcoming World AiArthritis Day on May 20th with AiArthritis. Delve into why raising awareness for AiArthritis diseases is crucial and discover ways you can actively participate on the global initiative. Through flashback segments, our co-hosts dissect the layers surrounding the term "arthritis," unraveling misunderstandings, family judgments, and the complexities of distinguishing AiArthritis from other conditions. Tune in for insightful discussions on diagnosis delays, access to treatments, fostering better health outcomes and how you can be a part of World AiArthritis Day!
Episode Highlights: ...2024-05-0534 minAiArthritis Voices 360 Talk ShowEp 95: Volunteering with AiArthritisCurious about how volunteering with AiArthritis could transform your life and the lives of others?
In the latest episode of AiArthritis Voices 360 Talk Show as co-hosts Leila, Michael, Jenni, Deeanne, Patrice, and Deb share heartfelt stories of their journey into volunteering with AiArthritis. From personal experiences to the profound impact AiArthritis has had on their lives as patients, they delve into the transformative power of community support. Discover why volunteering is vital and how the AiArthritis community has become a lifeline, offering understanding, empathy, and empowerment.
Join the conversation and learn how...2024-03-0349 minAiArthritis Voices 360 Talk ShowEp 94: Rheumy Rounds Rewind: Improving Doctor and Patient Communication During Office VisitsThis is an AiArthritis Voices 360 REWIND, where we are bringing back the first RheumyRound episode from 2020 where we opened the conversation on improving doctor office visits! Also note - you will hear the acronym IFAA, which we used prior to using AiArthritis.
Join us as our co-hosts, Tiffany and Kelly, and guests, Dr. Kim and Jerik Leung, explore the important dynamic between patients and doctors in healthcare communication. Through insightful dialogue and shared experiences from both the patient and physician perspective, we uncover strategies to enhance mutual understanding, empowering patients to articulate their needs and d...2024-02-0436 minAiArthritis Voices 360 Talk ShowEp 92 Breaking Research: Pharma & Non-Pharma 2023Join us in this episode as co-hosts Tiffany and Deb share a recap of the 2023 ACR, American College of Rheumatology Conference and how these topics specifically affect AiArthritis diseases. Tiffany and Deb also share an insight into our program, “Go With Us!” to Conferences. The Go With Us program allows patients to attend these conferences in real time and get updates on different important or emerging topics for AiArthritis diseases.
In this episode, the co-hosts discuss some main conference topics, both pharma and non-pharma, such as how precision medicine can greatly benefit patients by matching corre...2023-12-031h 07AiArthritis Voices 360 Talk ShowEp 91: AiArthritis Voices 360 REWIND - Distinction Between Autoimmune and Autoinflammatory diseasesThis is an AiArthritis Voices 360 REWIND, where we are bringing back two short episodes that were recorded way back in 2019, because chances the topics are very important! Also note - you will hear the acronym IFAA, which we used prior to using AiArthritis.
The first segment revisits an episode where Tiffany is joined by Dr. Apostolos Kontzias to explore the distinction between autoimmune and autoinflammatory diseases. In the second segment Tiffany discusses the importance of differentiating between arthritis types to improve the misunderstandings that are associated with arthritis and, in turn, will help expedite detection. J...2023-11-0538 minAiArthritis Voices 360 Talk ShowEp 88: Biosimilars - Interchangeability & Switching 2023This episode is a Step 5 - revisit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process.
What do patients need to know about the upcoming changes to biosimilars and interchangeability in 2023?
In this episode, Tiffany is joined by esteemed guest experts Michael Reilly, Dr. Ralph McKibbin and Andrew Spiegel to explore the difference between interchangeability , automatic substitution, and non-medical switching. Gain valuable insights into how these differences impact patients not only in the USA but also on a global scale.
In addition, our guests discuss the lat...2023-08-0659 minAiArthritis Voices 360 Talk ShowEp 87: AiArthritis Rant Discussions - Inspired by Am I the @$$holeAre you tired of feeling frustrated and unheard when it comes to your doctors, your disease, and all the challenges that come with it? Wish you had a platform to let it all out and find understanding?
Welcome to AiArthritis Rant Discussions - Inspired by Am I The @$$hole? Brace yourself for a new series that will give you a voice and an outlet to vent your frustrations. In this episode, our co-hosts Leila, Charis, and Patrice dive into the rants submitted by our AiArthritis community and they'll react, comment, and delve into topics that r...2023-07-0248 minAiArthritis Voices 360 Talk ShowEpisode 86 : Organ Involvement: Disease Symptom or Comorbidity?In this episode, Tiffany will discuss how different organs can be impacted by the disease and the difference between an organ being part of a disease and being a comorbidity. Tiffany will be exploring some examples of organs being affected in various diseases such as eyes, heart, gastrointestinal, and kidneys, as well as a newer autoimmune disease, IgG4, that is commonly being diagnosed for patients alongside their AiArthritis disease. It is crucial for patients to be proactive in their healthcare by asking their healthcare provider about organ involvement - as part of their disease or as a potential comorbidity...2023-06-0424 min
Eating For YouEpisode 35: Autoinflammatory disease relief with nutrition and movementIn this episode, I welcome back Angela Mills to discuss movement and nutrition to ease and support autoimmune disease and autoinflammatory arthritis.
Angela provides a clear description of these conditions, and shares how we can best support people we know that live with the often painful symptoms associated with them.
We also discuss foods and nutrients to reduce chronic inflammation, as well as practical tips to include movement and a way of eating that you can maintain.
Angela shares regular tips to keep moving on her Instagram Page: https://www.instagram.com/fitandfabulous...2023-05-2218 minAiArthritis Voices 360 Talk ShowEpisode 85: Elevator Pitches to Explain AiArthritis DiseasesHave you found yourself struggling to explain your AiArthritis disease to others?
In this episode, our co-hosts Leila, Charis, and Patrice put a new topic on the table: how to explain your AiArthritis disease in a 30-60 second elevator pitch. From your workplace to your personal life, our co-hosts will provide practical tips on how to tailor your elevator pitch to different audiences such as co-workers, family, friends or strangers to help you confidently communicate your AiArthritis and advocate for yourself. Join us in this episode to listen to varying elevator pitches as well as ha...2023-05-0745 minAiArthritis Voices 360 Talk ShowEp 84: I’m a Mystery Patient, Now What?Have you ever experienced the frustration of not being able to get a diagnosis, or worse, receiving the wrong one?
In this episode, our co-hosts Tiffany, Kelly, and Kerry, dive into what it is to be a mystery patient. In addition, they each share their personal experiences of being a mystery patient, and the challenges they experienced with delayed diagnosis.
They discuss the emotional toll that comes with being a mystery patient, including the frustration, anxiety, and uncertainty that can linger for months or even years. We also explore the physical co...2023-04-0241 minAiArthritis Voices 360 Talk ShowEpisode 83: Improving Communication Throughout the JIA JourneyHave you or your family been affected by juvenile arthritis? On this episode, Tiffany is joined by Rochelle Lentini, CEO and President of Purple Playas Foundation, who have united with other specialists and families to identify additional tips to improve communication.
During this episode, Rochelle and Tiffany discuss this new collaboration project between AiArthritis and Purple Playas Foundation, along with Rheumatology Nurses Society and Novartis, to create discussion aids and question guidance to help families improve communication with all the professionals they meet along the way.
Tiffany and Rochelle also provide suggestions that can offer s...2023-03-0538 min
ACR on AirAutoinflammatory DiseaseThis week, we have the distinct privilege to interview Dr. Dan Kaster, “The Father of Autio inflammatory Diseases”. His discoveries have taught us a great deal about how the immune system works, both in health and disease. His work has contributed to finding effective treatments for conditions that previously caused significant suffering and early death. Discussions around the many autoinflammatory diseases for which he is famous are had in this episode, but we dive deeper, asking about the keys to his success as an investigator as well. Dr. Kastner shares with us formative experiences as a medical student, skills he’s...2023-02-1452 minAiArthritis Voices 360 Talk ShowEpisode 82: AUTO + Autoinflammatory Arthritis: Diagnosis, Please!Join us for this episode where the co-hosts, Tiffany and Leila, share their personal journeys of being diagnosed with AiArthritis diseases. Tune in to hear how their journey of being diagnosed and misdiagnosed and the lessons they learned throughout the process.
We also delve into the exciting new resource tool being developed by AiArthritis, which helps patients navigate the process of seeking a diagnosis, understanding symptoms, and asking the right questions of their doctors. Plus, we invite other patients to share their stories and provide insights for those just starting their Auto + inflammatory arthritis journey. Jo...2023-02-0637 minAiArthritis Voices 360 Talk ShowEpisode 81 RheumyRounds: The Good, The Bad & The Ugly Pt. 2- Improving Office Visit CommunicationWelcome to part 2 of the Rheumy Rounds episode where we bring Rheumatologists and patients to the table. During this episode, we are going to be discussing the good, the bad and the ugly in office visits. In an effort to improve office visits and patient experiences, we are creating an Ebook with a collection of all your stories.
During this episode, Deb Constein and Tiffany Westrich-Robertson share their experiences as patients and Dr. Al Kim shares his perspective as a physician. In addition, we highlight the importance of active listening and communication during office visits. Jo...2023-01-0142 min
Around the RheumEpisode 27: Autoinflammatory Disorders With Dr. Dilan DissanayakeWe're thrilled to be joined by Dr. Dissanayake for this episode on Autoinflammatory Disorders. And we're also happy to have Janet Pope back in the host chair again with Daniel Ennis.Together, Dilan, Daniel, and Janet have a fascinating conversation, taking on basic questions like what defines an autoinflammatory disease and how is it distinct from an Autoimmune disease? What is the interplay between autoinflammatory and autoimmune disease? How can we group or arrange the different autoinflammatory diseases to make them a more approachable topic? How to take a proper autoinflammatory disease history? How to confirm a su...2022-12-1543 minAiArthritis Voices 360 Talk ShowEpisode 80 RheumyRounds: The Good, the Bad and the Ugly - Improving Office CommunicationWelcome to another Rheumy Rounds episode where we bring Rheumatologists and patients to the table. During this episode, we are going to be discussing the good, the bad and the ugly in office visits. In an effort to improve office visits and patient experiences, we will be collecting YOUR stories and examples of Good, Bad, and just downright Ugly office visits. We will turn this collection into an eBook and AiArthritis (patients) and rheumatologists will read your submissions and work together to create recommendations to improve office communications (citing YOUR examples!)
During this episode, Kerry Wong and T...2022-12-0446 minAiArthritis Voices 360 Talk ShowEpisode 79 : Patient Leadership In ResearchPatient involvement in research is key to developing knowledge and understanding around the many AiArthritis diseases. As a person living with AiArthritis diseases, there are lots of ways you can get involved with patient research such as clinical trials, surveys, focus groups, data banks and more. You can even elevate your participation through conference attendance and being part of the research team!
In this month’s episode, we join our co-hosts Tiffany, Deb, Kerry and Eileen, all living with AiArthritis diseases, as they discuss the importance of patient involvement in research. During this episode, the co-hosts will sh...2022-11-0545 min
Recurrent Pericarditis Podcast SeriesRecurrent Pericarditis in Systemic Autoinflammatory and Autoimmune Disease – Clinical Recognition and ManagementWhile healthcare providers may initiate corticosteroids in patients with recurrent pericarditis, patients with autoimmune rheumatic disease and cardiac involvement should also be managed in collaboration with a rheumatologist particularly. In this podcast, experts explore in more detail the diagnosis and clinical features of monogenic autoinflammatory diseases many of which can present with recurrent pericarditis. In addition, discussion will include the spectrum of autoimmune diseases complicated by pericarditis, how to recognize these clinically, and when to call for help. Listen Now!2022-11-0138 minAiArthritis Voices 360 Talk ShowEp 78 Diversity Equity Inclusion and AccessThis episode is a Step 2 - an initial visit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process.
DEIA : Diversity, Equity, Inclusion, and Accessibility. Each of these elements that affect patients daily should be considered when thinking about patient diagnosis, physician care, treatment plans, research, lifestyle choices, and societal inclusion.
In this month’s episode, we join Tiffany from AiArthritis, Estela Mata from Looms 4 Lupus, and Charis Hill - disability activist, as we are going to be discussing this topic. Each co-host has their own story to share, their experience with DEI...2022-10-021h 02AiArthritis Voices 360 Talk ShowEpisode 77: Biosimilars - What patients need to knowThis episode is a Step 2 - an initial visit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process.
As more treatment options are moving towards Biosimilars, many questions are being raised by patients. What are Biosimilars? Are they safe and effective? Are there downsides? Upsides? What are doctors' opinions on Biosimilars? What should I do if I am switched to a Biosimilar?
These are all questions that are at the forefront of our minds when living with AiArthritis diseases. This month, we invited patient advocates, doctors and coalition leaders t...2022-09-0455 minAiArthritis Voices 360 Talk ShowEpisode 76: COVID in 2022 - Evolving Concerns, Questions, and OpinionsThis episode is a Step 5 - a revisit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process
Over the last couple of years, the world has watched as COVID-19 has evolved into variants that differ slightly from the original virus. We’ve seen vaccinations and boosters work, yet we also know that new strains are somewhat resistant to high level protection. COVID treatments have emerged to help those who are immunocompromised - like those with AiArthritis diseases who are on immunosuppressive treatments - but can we access them and, if so, how?
W...2022-08-071h 03AiArthritis Voices 360 Talk ShowEpisode 75: The Whole Picture: Holistic, Personalized TherapyThis episode is a Step 2 - put the topic on the table for the 1st time - in our 6 Step Patient-Led Problem Solving Process
In this episode Tiffany, Deb, and Bridget talk about personalized therapy, or complimentary, non-pharmacologic options, that are being researched and added to new recommendations for full disease management.
We often talk about the importance of Precision Medicine (which involves finding the best pharmacologic treatment for each person’s individual needs), but as we, as patients, identify what works best for our unique needs, we have to consider all options (bot...2022-07-031h 02AiArthritis Voices 360 Talk ShowEpisode 74: EveryONE’s Voice ’Precisely’ MattersThis is a Step 5 Episode*
In this episode, Tiffany, CEO of AiArthritis, is joined by Catherine Ames, from the Young Patients’ Autoimmune Research & Empowerment Alliance, both persons living with AiArthritis diseases and both who attended the 16th Annual Personalized Medicine Conference in May 2022. Precision Medicine (PM) may currently be in the cancer space, but it’s quickly moving into the autoimmune/autoinflammatory space and there are some things they want you to know. What is it? Why is it important to understand and what can you do to make sure you can benefit most from it as...2022-06-051h 00
StillsNow PodcastEULAR 2020- Autoinflammatory_Stills Disease PanelFeaturing Drs. Olga Petryna, Petros Efthimiou, Apostolos Kontzias and Jack Cush discussing autoinflammatory highlights from the Virtual EULAR 2020 meeting held June 3-6, 2020
2022-05-1430 min
StillsNow PodcastEULAR 2020- Autoinflammatory_Stills Disease PanelFeaturing Drs. Olga Petryna, Petros Efthimiou, Apostolos Kontzias and Jack Cush discussing autoinflammatory highlights from the Virtual EULAR 2020 meeting held June 3-6, 2020
2022-05-1430 minAiArthritis Voices 360 Talk ShowEpisode 73: ”Arthritis” Awareness - It’s Complicated!In this revisit to the table (Step 5 in our problem-solving process), Tiffany, Katie, Effie, Eileen, and Kerry discuss the many layers around the word “arthritis” including: 1) Misunderstandings around the word that can lead to delays in diagnosis, family and friend judgements, and the different type associated with “AUTO” diseases; and 2) Complexities that exist when trying to identify the AiArthritis from other potential comorbidities (Osteoarthritis, bursitis, enthesitis) and how clarity about this could help with detection, access to the right treatments, and overall better health outcomes.
This conversation takes many turns, all which address issues identified from lived...2022-05-011h 05
Practical Neurology PodcastAutoinflammatory syndromes in neurology: when our first line of defence misbehavesDr Amy Ross Russell, Neurology, University Hospital Southampton NHS Foundation Trust, interviews Dr William Diprose, Dept. of Neurology, Auckland City Hospital and Dept. of Medicine, Faculty of Medicine and Health Science, University of Auckland, New Zealand; Dr Anthony Jordan, Dept. of Clinical Immunology and Allergy, Auckland City Hospital, NZ; and Dr Neil Anderson, Dept. of Neurology, Auckland City Hospital, NZ about their recent paper reviewing the neurological features of specific autoinflammatory syndromes.
Read this latest Editor’s Choice paper on the Practical Neurology website (https://pn.bmj.com/content/22/2/145) and the April print issue of the journal.
The paper is al...2022-04-1939 minBMJ talk medicineAutoinflammatory syndromes in neurology: when our first line of defence misbehavesDr Amy Ross Russell, Neurology, University Hospital Southampton NHS Foundation Trust, interviews Dr William Diprose, Dept. of Neurology, Auckland City Hospital and Dept. of Medicine, Faculty of Medicine and Health Science, University of Auckland, New Zealand; Dr Anthony Jordan, Dept. of Clinical Immunology and Allergy, Auckland City Hospital, NZ; and Dr Neil Anderson, Dept. of Neurology, Auckland City Hospital, NZ about their recent paper reviewing the neurological features of specific autoinflammatory syndromes.
Read this latest Editor’s Choice paper on the Practical Neurology website (https://pn.bmj.com/content/22/2/145) and the April print issue of the journal.
The paper is al...2022-04-1939 min
Practical Neurology PodcastAutoinflammatory syndromes in neurology: when our first line of defence misbehavesDr Amy Ross Russell, Neurology, University Hospital Southampton NHS Foundation Trust, interviews Dr William Diprose, Dept. of Neurology, Auckland City Hospital and Dept. of Medicine, Faculty of Medicine and Health Science, University of Auckland, New Zealand; Dr Anthony Jordan, Dept. of Clinical Immunology and Allergy, Auckland City Hospital, NZ; and Dr Neil Anderson, Dept. of Neurology, Auckland City Hospital, NZ about their recent paper reviewing the neurological features of specific autoinflammatory syndromes.
Read this latest Editor’s Choice paper on the Practical Neurology website (https://pn.bmj.com/content/22/2/145) and the April print issue of the journal.
The paper is al...2022-04-1239 minAiArthritis Voices 360 Talk ShowEpisode 72 The Myth of Average: Time for ChangeJoin Tiffany and Deb, both persons living with AiArthritis diseases, then Tiffany and John O'Brien, CEO of the National Pharmaceuticals Council, as they put the topic of importance of innovation & treatment access in research and public policy 'on the table'. Learn how YOU can join efforts to impact change!
Who is 'at the table'?
Tiffany Westrich-Robertson, CEO AiArthritis, person living with non-radiographic axial spondyloarthritis
Deb Constien, AiArthritis Volunteer, person living with rheumatoid arthritis
John O'Brien, President & CEO of the National Pharmaceutical Council (NPC)
In this two segment episode, first join AiArthritis team - T...2022-04-031h 13AiArthritis Voices 360 Talk ShowEpisode 71: Supporting Me, Supporting You, Supporting Us - Revisit to the TableA revisit to the table with Deb Constien, Estela Mata, and Tiffany Westrich-Robertson as they continue discussing the dynamics of support - including needs of the patient as well as others in the patient's support circle. Building on Episode 43 and Episode 48, they start a support tracking tool to help patients and families/friends better assess their needs and how, together, we can work to address them! You're invited to help us continue developing this aid - find out how!
*All our main 1st Sunday of the month episodes are either an initial "put the topic on the t...2022-03-0655 minAiArthritis Voices 360 Talk ShowEpisode 70: The Future of Shared-Decision Making & E-Health in Rheumatology Starts with YOU! Revisit to the TableIn this episode, AiArthritis CEO and person living with Axial Spondyloarthritis - Tiffany Westrich-Robertson - and Dr. Lisa Zickuhr - rheumatologist from Washington University - continue the conversation around shared-decision making and its importance around patient-rheumatologist communication. They focus on a research project both are involved in, and that YOU can join! The project aims to explore patient-reported and rheumatologist-reported barriers to virtual care and, in turn, work towards developing shared-decision making guidance for rheumatologist to adopt in e-health situations.
They also took the opportunity to break out into a segment on COVID-19 and shared-decision making, This s...2022-02-0644 minAiArthritis Voices 360 Talk ShowEpisode 69: Changing the World from Your Sofa! Meet the VolunteersIn this episode, Tiffany Westrich-Robertson (AiArthritis CEO) and Katie Simons (Senior Programs & Communications Manager) talk about the heart and soul of our organization - the volunteers! Meet five volunteers from around the world - Deb, Katie, and Leslie from the United States, Pooja from India, and Judy from Australia - hear from them just how much they've accomplished by joining our team and the impact they've helped us achieve! Learn more about many of our programs and ways YOU can get involved in 2022! Patient voices and all other stakeholders welcome!
Learn more about the following pr...2022-01-0257 minAiArthritis Voices 360 Talk ShowEpisode 53: FDA Public Meeting Opportunity - Patients ”at the table”This week join your patient co-host Danielle Dass as she reports back on her experience attending an American Food and Drug Administration (FDA) Public Meeting on behalf of the International Foundation for Autoimmune and Autoinflammatory Arthritis. The meeting was intended to gather information from patients, medical professionals, and industry personnel about the accessibility and utility of safety communications regarding medical devices to better inform FDA practices.
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis patient community. This means...2021-12-1017 minAiArthritis Voices 360 Talk ShowEpisode 68: Rant Ahead! Together We Can Make ChangeIn this episode, AiArthritis CEO - and person living with axial spondyloarthritis - throws a topic on the table that everyone can relate to...ranting.
We all experience situations of frustration, when something we believe in, we want to happen, we wish could be different hits the point where we must vent. Sometimes that vent is to ourselves, other times it's public for all to see. We rant for support, to bring change, to be heard, or to get something off our chest. Regardless of the reason, sometimes it's just necessary.
Tiffany introduces two issues t...2021-12-0524 minAiArthritis Voices 360 Talk ShowEpisode 67: Making Informed Decisions in Unprecedented Times - Focus on Actemra ShortageThis week join your recurring patient co-hosts Tiffany Westrich-Robertson, Katie Simons, and Deb Constien as they discuss the importance of making informed decisions in the management of aiarthritis diseases in unprecedented times. Our hosts will tackle this issue - as well as the related Actemra shortage, which is forcing patients, like Deb, off of the medications that work best for them in order to accommodate hospitalized COVID patients (most which are unvaccinated).
In order to participate in shared decision-making, patients must have access to accurate and updated information about treatment options, vaccinations, and other pressing health concerns...2021-11-0757 minAiArthritis Voices 360 Talk ShowEpisode 66: The Pathway of Patient Engagement in Rheumatology ResearchThis week join your patient co-hosts Tiffany Westrich-Robertson, Cheryl Koehn, and Maarten de Wit as they introduce us to the Pathway of Patient Engagement in Rheumatology Research. Tiffany is the founder and CEO of AiArthritis. Cheryl Koehn is the founder and President of Arthritis Consumer Experts - Canada’s largest patient organization. Maarten is the Chairperson for the Study Group for Collaborative Research for EULAR (European Alliance of Associations for Rheumatology).
Tiffany, Cheryl, and Maarten are all leaders of the ACTion Council - an organization dedicated to preserving the past and advancing the future in patient-involved rheumatology res...2021-10-0349 minAiArthritis Voices 360 Talk ShowEpisode 65: Young and InvisibleThis week join your recurring patient co-hosts Katie Simons and Deb Constien as they discuss the experience of being diagnosed with arthritis as a juvenile and the importance of differentiating between the different types of AiArthritis diseases. Katie is the Senior Program and Communications Manager for AiArthritis and a patient living with inflammatory arthritis. Deb is a dietitian, an experienced patient advocate and ambassador for the AiArthritis community, and a patient living with inflammatory arthritis. They both discuss the complicated nature of identifying just precisely what their diagnosis is as adults who were originally diagnosed with a juvenile form...2021-09-0540 minAiArthritis Voices 360 Talk ShowEpisode 64: The office visit - viewpoints from both the patients AND the rheumies!In this episode, Tiffany, Deb, Patrice, and Katie - all persons living with AiArthritis diseases - attended the 2021 European Alliance of Associations for Rheumatology (EULAR) Scientific Congress and convened several times over a few weeks to review the sessions most relevant to our community and to the work we do at our organization.
The sessions reviewed in this segment involved "patient-rheumy communication", which we were happy to see covered so much at the conference! So, while historically all of our debriefs are patient-led only, we decided for the first time to invite two rheumatologists to 'zoom bomb...2021-08-0127 minAiArthritis Voices 360 Talk ShowEpisode 63: COVID-19, Vaccinations, Shared-Decision Making, & Rheumy CommunicationsThis week join your patient co-hosts, Tiffany Westrich-Robertson, CEO of the International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis), and recurring 2021 patient co-host Deb Constien as they welcome two special guests to the table for a new episode of our Special Series on COVID-19. They are joined today by two practicing adult rheumatologists: Dr. Al Kim ("Al") of the Washington University School of Medicine and Dr. Jeff Sparks ("Jeff") of the Harvard School of Medicine *.
In this segment of the debrief, the rheumies update us on COVID-19 vaccinations and new research. Jeff received an abstract award at th...2021-07-0428 minAiArthritis Voices 360 Talk ShowEpisode 62: Patient-Reported EULAR2021 Debriefs ... and We‘re Off!This week join your patient co-hosts Tiffany Westrich-Robertson, Deb Constien, Patrice Johnson, Katie Simons, and Leslie Rott Welsbacher as they brief our AiArthritis patient community on the first day of EULAR 2021. Tiffany, Deb, and Katie are the core team members attending the conference, but as part of our "Go with Us! to Conferences" program, we have invited three patients to be part of the experience, too! Joining us for this debrief are Patrice Johnson and Leslie Welsbacher. Patients are one of three pillars of EULAR (researchers and medical professionals make up the other two) and are encouraged to attend...2021-06-061h 05
See the Invisible: Living with an Invisible or Rare DiseaseAutoimmune vs. AutoinflammatoryI explore the difference between Autoimmune and Autoinflammatory illnesses. I admittedly used to use these terms interchangeably until I found out that they were different. It's important to know the differences to try to reach a quicker diagnosis as well as determine best treatment plans.Allstripes blog: https://www.allstripes.com/blog/twelve-rare-disease-podcasts-we-love-that-are-still-making-new-episodesContact:Email: Seetheinvisible2020@gmail.comTwitter: Ronda F Jefferson (@CInvisible2020) / TwitterFacebook: SeetheInvisible2020 | FacebookWebsite: SeetheInvisible2020.com – Dare to be seen!Instagram: Ronda Jefferson (@seetheinvisible2020) • Instagram photos and videos2021-05-0446 minAiArthritis Voices 360 Talk ShowEpisode 61: 2021 Charity TalkThis week join your patient co-hosts Tiffany Westrich-Robertson and Deb Constein as they discuss AiArthritis’ 2021 Annual Fundraising Effort: The Charity Talk. Since many of the members of the AiArthritis community are unable to walk long distances, AiArthritis decided to host a Charity Talk in lieu of the traditional Charity Walk. The purpose is to raise awareness, educate the public about our diseases, and raise money to support the ongoing work our organization does to serve the 450 million people worldwide living with AiArthritis diseases.
Would you like to get involved? You can download free materials to host your own...2021-05-0219 minAiArthritis Voices 360 Talk ShowEpisode 60: The COVID-19 Blues - It‘s OK to ask for helpThis week, join your patient co-hosts Kelly Conway and Rick Phillips and special guest Heather Kenjorski for a frank discussion about mental health, AiArthritis patients, and the COVID-19 pandemic. Kelly is a co-founder of AiArthritis and the author of the blog As My Joints Turn: My Autoimmune Soap Opera, as well as a recurring co-host for AiArthritis Voices 360. Rick is the founder of RA Diabetes, a website devoted to people who have both Rheumatoid Arthritis and Type I Diabetes and a returning AiArthritis Voices 360 co-host. You can check out Rick’s recent appearance in Episode 48: Support, which also tackled is...2021-04-0453 minAiArthritis Voices 360 Talk ShowEpisode 59: Learned Experiences- Let the Evolution Continue!This week join your patient host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, as she discusses the mission and future projects of The International Foundation for Autoimmune and Autoinflammatory Arthritis and the AiArthritis Voices 360 Talk Show.
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. We do this by engaging in a 6-step process (as outlined in Episode 27: The Method To Our Madness) for bringing pressing issues to the table for conversations to create solutions to improve...2021-03-2119 minAiArthritis Voices 360 Talk ShowEpisode 58: Diet, Research, & AiArthritis - an ACR Special PresentationThis week join your patient co-host Deb Constien as she reports from the 2020 American College of Rheumatology Conference on Dietary Modifications and the Microbiome as potential future therapeutic options for the treatment of AiArthritis diseases. Deb is a medically retired registered dietitian who has been living with Rheumatoid Arthritis for 39 years. She attended two fascinating sessions on these topics at the 2020 ACR Conference and gives a State of the Research presentation for all of us who weren’t able to attend the sessions ourselves.
AiArthritis believes that the future of Rheumatology lies in precision medicine and shared-decision-making wh...2021-03-0721 minAiArthritis Voices 360 Talk ShowEpisode 57: RheumyRounds Special Airing - COVID-19 & Vaccinations Communication, Education, & Shared-Decision MakingThis week join your patient co-hosts, Tiffany Westrich-Robertson, CEO of the International Foundation for Autoimmune and Autoinflammatory Arthritis, and Kelly Conway, co-founder of AiArthritis and author of the popular blog As My Joints Turn: My Autoimmune Soap Opera, as they welcome three special guests to the table for a new episode of the Voices 360 Special Series: Rheumy Rounds. They are joined today by three practicing adult rheumatologists: Dr. Al Kim of the Washington University School of Medicine, Dr. Vibeke Strand of the Stanford University School of Medicine, and Dr. Jeff Sparks of the Harvard School of Medicine. In this...2021-02-241h 07AiArthritis Voices 360 Talk ShowMinisode Special: Decision Making w/ Vaccinations & Special Rheumy Rounds Announcement!We are excited to announce the return of our Rheumy Rounds episode series, starting with a special episode release this Wednesday, February 24th! Joining us at the table are Dr. Al Kim, Dr. Vibeke Strand, Dr. Jeffrey Sparks, and returning co-host Kelly Conway - facilitated by patient host, Tiffany Westrich-Robertson (CEO of AiArthritis). In this special episode, we will be diving deeper into the perceived barriers of vaccination from both a patient perspective as well as that of the rheumatologist. How do we assess the benefits and risks of vaccination? What solutions are available to the AiArthritis community? All t...2021-02-2110 minAiArthritis Voices 360 Talk ShowEpisode 55: Patients Weigh In What‘s in a Name - the Spondy EvolutionThis week join your patient co-hosts Tiffany Westrich-Robertson, Charis Hill, Richard Howard, and Jennifer Walker for a round table conversation about the debate surrounding the nomenclature of the Spondyloarthritis disease umbrella. Tiffany is the CEO of the International Foundation for Autoimmune and Autoinflammatory Arthritis and a patient living with non-radiographic axial spondyloarthritis. Charis is a disability advocate, the author of the blog Being Charis, and a patient originally diagnosed with ankylosing spondylitis, and while would fit the current description (with radiographic damage), at diagnosis they did not have radiographic damage. Rich is the Chief Mission Advancement Officer for the...2021-02-071h 02AiArthritis Voices 360 Talk ShowEpisode 54 COVID19 & AiArthritis Special Series: Vaccine questions & mixed messagesThis week join your patient co-hosts, Tiffany Westrich-Robertson, CEO of the International Foundation for Autoimmune and Autoinflammatory Arthritis, and Kelly Conway, co-founder of AiArthritis and author of the popular blog As My Joints Turn: My Autoimmune Soap Opera, as they sit down with Dr. Al Kim, Rheumatologist and Founder & Co-Director of the Lupus Clinic at the Washington University School of Medicine. Today’s episode will be a heart-to-heart conversation with Dr. Kim about questions, concerns, and mixed messages surrounding the COVID-19 vaccine.
Tiffany and Kelly, as people who live with AiArthritis diseases and participate in online patient co...2021-01-241h 06AiArthritis Voices 360 Talk ShowEpisode 52: An Unprecedented Year in ReviewThis week join your patient co-host Tiffany Westrich-Robertson, CEO of International Foundation for Autoimmune and Autoinflammatory Arthritis, as she gives our annual “Year End Review” reflection. In honor of this unprecedented year, this episode will not be the usual briefing on the annual accomplishments of the organization. That information is still available on our website at www.aiarthritis.org, and we will be publishing an annual report very soon.
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. We s...2020-12-2711 minAiArthritis Voices 360 Talk ShowEpisode 51: Oh Mama! Special Series Episode 2 - Breastfeeding with AiArthritis DiseasesThis week join your patient co-hosts Danielle Dass, Mariah Leach, and Cheryl Crow as they bring an important topic from the American College of Rheumatology Annual Conference to our show - a session that Mariah and Cheryl led at the conference! This episode will be part of a series of planned episodes on postpartum challenges for new mothers living with AiArthritis Diseases. Today’s episode will focus on the emotional and physical challenges of breastfeeding.
Mariah Leach is the founder of Mama’s Facing Forward, a group dedicated to providing support and resources for pregnant women and moth...2020-12-1332 minAiArthritis Voices 360 Talk ShowEpisode 50: Grit, Gratitude and Grace: A positive mindset can improve pain and resilienceThis week join your patient co-hosts Tiffany Westrich-Robertson, Deb Constein, and Patrice Johnson as they take us back stage at the American College of Rheumatology Annual Conference. This episode will focus on a session from ACR titled “Grit, Gratitude, and Grace” about the impact that positive psychology can have on disease and pain management for AiArthritis patients.
Researchers induced pain in healthy adult military cadets to study the relationship between mindset and pain perception. They found that subjects with more positive attitudes, resilience to adversity, and growth mindsets reported lower pain levels than those who did not shar...2020-11-2925 minAiArthritis Voices 360 Talk ShowEpisode 49: Your disease, my disease, Still‘s disease - what are doctors learning to expedite diagnosis?Special Series: American College of Rheumatology (ACR) Scientific Meeting 2020, "Go with Us!" to Conferences program
This week join your patient co-hosts Tiffany Westrich-Robertson, Deb Constien, and Patrice Johnson as they take us backstage at the American College of Rheumatology Annual Conference. Tiffany and Deb attended two sessions at the conference on Stills Disease, and they brief Patrice and the rest of us on what they learned. Regardless which "auto" disease you have, this conversation is important, as it provides an insider view of what is being taught to doctors to help them expedite diagnosis.
...2020-11-1546 minAiArthritis Voices 360 Talk ShowEpisode 48: Support: It’s not so simple. Diverse needs for difference experiences.Join Patrice, Effie, and Rick as they share their experiences with support - which all differ per personal relationships and perspectives. That means there are different needs that we must address to help everyone.
Patrice has no support from her spouse, Rick has tremendous support from his, and Effie weighs in on support needs from a single's point of view. They also talk about the needs of all others involved in our journey, as AiArthritis diseases impact every person in our lives. In turn, they too have support needs.
If you are a person living with AiArthritis diseases, what's your expe...2020-11-0128 minAiArthritis Voices 360 Talk ShowEpisode 47: Teamwork makes the dreamwork: AiArthritis WINS Best Team Performance 2020This week join your patient host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, for a special AiArthritis Watch Party for the announcement of the winners of the 9th Annual WEGO Health Awards. The WEGO Health Awards were created to embody the mission of WEGO Health: to empower patient leaders by recognizing their contributions to the field of healthcare. There are 16 categories of awards that this year included over 13000 nominees and 96 finalists.
AiArthritis is thrilled to announce that we won the 2020 WEGO Health Award for Best Team Performance! We are so grateful to all of our volunteers, s...2020-10-1816 minAiArthritis Voices 360 Talk ShowEpisode 46: The ”A” WordThis week join us for an AiArthritis Voices 360 first! In honor of World Arthritis Day on October 12, 2020, seven of your recurring Voices 360 co-hosts come together for an essential conversation about educating the public and the medical community about the many different types of arthritis that exist, especially the key differences between Osteoarthritis and AiArthritis. Thank you to Tiffany Westrich-Robertson, Deb Constien, Rick Phillips, Effie Koliopoulos, Patrice Johnson, Suz Schrandt, and Judy Flanagan for participating in this important round table discussion.
Our organization was enlisted in 2012 by EULAR to help bring more attention on World Arthritis Day to t...2020-10-041h 01AiArthritis Voices 360 Talk ShowEpisode 45: This is for all the marblesThe mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders so, together, we can solve problems impacting the autoimmune and autoinflammatory arthritis community.
Join Tiffany Westrich-Robertson, CEO, as she explains that each person - and our associated roles - are like marbles. If each stakeholder group is a color, and only one color is in the jar, we will never develop solutions that matter to all stakeholders involved in the problem. So we are evolving the show - and our associated online AiArthritis Voices platform, which will now be available for all stakehold...2020-09-2016 minAiArthritis Voices 360 Talk ShowEpisode 44: Patient-Reported Symptoms - Connecting the dots to improve educationThis week join your patient host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, as she discusses the mission and future projects of the organization and the AiArthritis Voices 360 Talk Show.
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. AiArthritis is proud to announce the impending publication of the first-ever 100% patient-reported symptoms brochure for Stills Disease, launching on September 7th 2020 - Stills Disease Awareness Day. This project could not have been possible without the participation of patients...2020-09-1323 minAiArthritis Voices 360 Talk ShowEpisode 43: Support - It‘s a Family AffairThis week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, and Juana and Estela Mata, co-founders of Looms 4 Lupus, as they discuss the complicated issues surrounding supporting patients living with autoimmune and autoinflammatory arthritis diseases and their loved ones.
Looms 4 Lupus is an organization dedicated to providing an environment for education and outreach to Lupus and Fibromyalgia survivors and their family members through multiple avenues such as hands-on workshops, informational clinics, bilingual resources, and psychosomatic support groups.
On this episode, Tiffany, Juana, and Estela talk about the need for support for...2020-08-3038 minAiArthritis Voices 360 Talk ShowEpisode 42: Treat to Target Today with Complex Diseases - Is it Possible?Join TIffany and Rick as they address the challenges involved as Treat 2 Target has emerged from aggressive treatments for a larger population to treating per the individual and based on the complexity of each disease.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your tur...2020-08-2353 minAiArthritis Voices 360 Talk ShowEpisode 41: Biomarkers - DIagnosis, Disease Management, & even PREVENTION?!This week, Tiffany and Patrice discuss the importance of biomarkers. Do biomarkers hold the key to understanding disease severity and predicting disease onset?
In this episode, we talk about biomarkers, or a measurable indicator present in the blood or tissues, and how their presence in our bodies can predict disease severity and guide treatment development. Furthermore, evidence that identifying biomarkers early - BEFORE DISEASE ONSET - could actually prevent a person from developing the disease. Now, there is still the environmental plus genetic factors to consider, but the findings are promising.
While the research focuses on Rheumatoid Arthritis (RA), showing how...2020-08-1643 minAiArthritis Voices 360 Talk ShowEpisode 40 Research at a Glance - Posters & Abstracts: Patient reviewers, here we come!Today Tiffany talks about Posters & Abstracts, or summaries of research, thousands published annually just within the rheumatology community. So, unless the poster is featured in a session, attendees must search the poster database to learn about recent, current, or ongoing research that may be of importance to know.
As we continue our tour of the EULAR scientific conference*, we are inviting patients from around the world to join our team in patient-led Poster/Abstract research reviews. During today's show, Tiffany simulates the simplicity of viewing this short research summary and the value associated with patients (and patient...2020-08-0926 minAiArthritis Voices 360 Talk ShowEpisode 39: Patient Engagement in Research: the OMERACT ExperienceThis week Tiffany (axial spondyloarthritis) and Deb (rheumatoid arthritis) talk about their experiences - and which could be YOUR experiences - having your voice count in research initiatives.
New primary outcomes (endpoints that should be measured) in rheumatology trials where shared-decision making between doctors and patients are required...and patients were part of this historic decision. This was part of the international, collaborative of rheumatology stakeholders - OMERACT (Outcome Measures in Rheumatology).... and Deb and Tiffany were there and they want to tell you all about it!
Learn more about OMERACT.
AiArthritis projects referenced in this episode:
Preparing Patients for Prec...2020-08-0233 minAiArthritis Voices 360 Talk ShowEpisode 38: EULAR Debrief Treat to TargetAiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/podcast.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, wher...2020-07-2637 minAiArthritis Voices 360 Talk ShowEpisode 37: Patient? Nonprofit? Researcher? Healthcare Services? You‘re invited to an experience that can change our future.We don't represent patient voices, we are the patient voices. We work hard to ensure ALL voices - not just a small percentage of select patients - are counted. And now we have the platforms in place to include everyone's voice who diagnosed with AiArthritis diseases - regardless of geography or disease limitations. We also have the tools and professional experience to bridge the patient conversation with other stakeholders (doctors, nurses, researchers, legislators, drug manufacturers, non-pharmacologic companies, etc) so, together as equals, we can solve the most pressing community problems.
It's finally ready! Two years in the works, but now th...2020-07-1928 minAiArthritis Voices 360 Talk ShowEpisode 36: Preparing Patients for Precision Medicine - Collaboration with the Rheumatology Nurses SocietyWelcome to AiArthritis Voices 360, the official Talk Show for the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis).
In this episode, Event Host, AiArthritis CEO and person living with AiArthritis diseases, Tiffany Westrich-Robertson, is joined by patient Co-Host, Katie Steele. They speak with Carrie Beach, RN, from the Rheumatology Nurses Society (RNS) about our collaboration to improve patient voices in education and research (featuring our award-finalist Preparing Patients for Precision Medicine project). This is an excellent example of how patients and rheumatology professionals sit "at the table" to discuss projects - because during the conversation we actually came up with a new sp...2020-07-1233 minAiArthritis Voices 360 Talk ShowEpisode 35: ORIGINAL EPISODE REPLACED - AUTO Ball Honorary Chair, Angela Durazo: Shifting Gears - Turning Pain into PowerWhile we asked Ms. Durazo if we could keep this resource for you to help navigate your challenges with invisible disease, she declined, stating the contract to use the Angela Durazo brand was only agreed upon for a one year term.
You can find several other invisible disease episodes and associated conversations to join! We have connected this show space with a previous episode on invisible disease.
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you...2020-07-0554 minAiArthritis Voices 360 Talk ShowEpisode 34: EULAR 2020 e-Congress Debrief - Treatment recommendations, adherence, cardiovascular comorbidities & moreWelcome to AiArthritis Voices 360 - the talk show hosted by the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis), whose mission is to help others, like us, living with AiArthritis diseases, have a voice "at the table" alongside other stakeholders as equals, to solve problems that impact education, advocacy, and research.
This week Tiffany, Deb, and Patrice are learning while having a great time as they have been "at EULAR 2020", which was supposed to take place in Germany June 3-6, but is now ONLINE - through September 1st. In this debrief, which is the third of fou...2020-06-2853 minAiArthritis Voices 360 Talk ShowAt The Table Episode 29: From Mini to Mega- Expanding the TableWelcome to AiArthritis Voices 360 At The Table. For our final Wednesday minisode, we have important news to share as we re-structure our podcast to expand our platform to appeal to all potential patients...and so, in turn, more voices can be "at the table". Tune in to learn more about this exciting transformation!
Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, re...2020-06-2517 minAiArthritis Voices 360 Talk ShowEpisode 33: You‘ll always be my baby- lessons from dadIn this episode, Tiffany Westrich-Robertson, CEO of the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) reflects on her choices about motherhood. While she never felt the "mother bug" to have children of her own, failed relationships led her on the path to dedicate her life to her career - and ultimately she "birthed" this organization.
Like a parent, she has given her heart and soul into its' development over these 9 years and is proud of the accomplishments she and the other patient leaders have achieved. But she also knows her work as a parent is not over, a...2020-06-2119 minAiArthritis Voices 360 Talk ShowAt The Table Episode 28: It‘s not all ”Arthritis”: Osteoarthritis vs. AiArthritisThis mini-episode originally aired in our AUTO Ball LIVE event (May 16 - 20th on Facebook), but the topic is so important we turned it into a fully produced episode!
Tiffany discusses the importance of raising awareness that the AUTO diseases - autoimmune and autoinflammatory diseases - that include arthritis as a major clinical component are not the same as other types of arthritis. Specific examples include osteoarthritis (due to aging, wear and tear, injury, or excessive pressure on the join), and gout. Failure to differentiate these types of arthritis leads to public confusion, and as a result...2020-06-1813 minAiArthritis Voices 360 Talk ShowEpisode 32 Differentiating Arthritis Types - AUTO + Arthritis = Early Detection, Referrals, DiagnosisBetween May 16 - 20th, we took our AiArthritis Voices 360 Talk Show LIVE, to help teach more people who we are, what we do, and how we impact the lives of those affected by AiArthritis Diseases while honoring the 450 million people worldwide living with our diseases. It also served as the starting line for our 2020 fundraising efforts.
Differentiating Arthritis Types will help all people, with all types of arthritis, gain more understanding - and possible respect - for their condition, will increase detection and referrals, can lead to improved Quality of Life (QOL) and lower healthcare costs long ter...2020-06-141h 30AiArthritis Voices 360 Talk ShowAt The Table Episode 27: Your experience is key to unraveling the mysteries of COVID-19 - is your experience being counted?In this week's mini-sode, Tiffany talks about the importance of being counted in research, especially in times when a new disease emerges and only a select few are truly being studied. This is the case with COVID-19, as most research emerging is based on studying people with confirmed positive results. However, due to lack of testing, false negatives (and positives), and other challenges associated with a disease in its' infancy, it's more important now than ever to ensure ALL people, perspectives, and experiences are counted.
Our community is asking many questions about how COVID-19 affected our diseases. T...2020-06-1118 min
Rheumnow PodcastAutoinflammatory Still's Disease Panel - EULAR2020Drs. Olga Petryna, Petros Efthimiou, Apostolos Kontzias and Jack Cush discuss autoinflammatory highlights from the Virtual EULAR 2020 meeting June 3-62020-06-0830 minAiArthritis Voices 360 Talk ShowEpisode 31 Special AUTO Ball Series: E-Health Surge - Impacting Rheumy VisitsJoin Tiffany and Deb, fellow patient co-hosts, for the AiArthritis Voices 360 Talk Show as they welcome Dr. Lisa Zickuhr, rheumatologist from Washington University School of Medicine, to discuss the barriers and benefits of e-health/telehealth as we navigate the new world of COVID-19. How are online visits impacting YOUR care with your rheumy? What is working? What isn't? What do we need to improve?
During this discussion, Dr. Zickuhr explains current efforts to streamline e-health visits as we move forward - which patients will be seen in person? Which will use tele-health or video calls? Deb and...2020-06-071h 04AiArthritis Voices 360 Talk ShowSpecial Announcement: AiArthritis is LIVE on YouTube for EULAR!The European League Against Rheumatism (EULAR) 2020 Scientific Congress, which was supposed to take place in Frankfurt, Germany June 3 - 6 is now being held ONLINE starting June 3 and accessible to patients FOR FREE* through September 1st! Attend with AiArthritis and we will help you navigate the meeting, but also you can join us for post-session conversations, be part of the meetings with other attendees and more! Find us LIVE on YouTube, June 3 at 4pm EST/1pm PST here:
https://youtu.be/bOSHJWGOWY0
Register at https://congress.eular.org/ and sign up to attend with us...2020-06-0300 minAiArthritis Voices 360 Talk ShowEpisode 29 Special AUTO Ball Series: Conferences and E-HealthThis week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis and Deb Majcher Constien, AiArthritis volunteer and patient advocate, as they discuss the importance of AiArthritis leaders attending conferences. At EULAR (European League Against Rheumatism) Congress in 2019, Tiffany and Deb attended a session on the existing efforts to advance e-health so we could reach more rheumatic patients and, in turn, improve their health.
They are joined by Aurelie Najm, rheumatology researcher with EULAR and OMERACT (Outcome Measures in Rheumatology). Aurelie was a panelist at the EULAR e-health session and previously made another guest...2020-05-311h 02AiArthritis Voices 360 Talk ShowAt The Table Episode 26: AUTO Ball COVID-19Between May 16 - 20th, we took our AiArthritis Voices 360 Talk Show LIVE for the AUTO Ball Online to help teach more people who we are, what we do, and how we impact the lives of those affected by AiArthritis Diseases and to honor the 450 million people worldwide living with our diseases. It also served as the starting line for our 2020 fundraising efforts. This episode of AiArthrits Voices 360 was recorded during the AUTO Ball Online event. For more information about the AUTO Ball, visit aiarthritis.org/AutoBall.
This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International F...2020-05-2826 minAiArthritis Voices 360 Talk ShowEpisode 28 Special AUTO Ball Series: Co-Founders Introduce the AUTO Ball OnlineBetween May 16 - 20th, we took our AiArthritis Voices 360 Talk Show LIVE, to help teach more people who we are, what we do, and how we impact the lives of those affected by AiArthritis Diseases while honoring the 450 million people worldwide living with our diseases. It also served as the starting line for our 2020 fundraising efforts.
This inaugural gala, the AUTO Ball, was originally scheduled to take place in St. Louis, MO, our headquarters, at the National Museum of Transportation - Earl C. Lindberg Auto Museum. Due to COVID-19, the physical event was canceled. However, since this t...2020-05-241h 00AiArthritis Voices 360 Talk ShowSpecial Announcement: the Auto Ball is live for AiArthritis Day!We are proud to host World AUTOimmune & AUTOinflammatory Arthritis Day #aiarthritisday for the 8th year since we established this day in 2012.
Get involved throughout May 20th - as it travels through all time zones globally - that's 47 hours! We are playing on the word AUTO to DRIVE awareness that our diseases are FULL BODY.
If your disease was compared to a car - or auto part - how would you describe it? Are you a "classic" (text book), maybe a convertible because of all the brain fog, have flat tires (fatigue).... so many ways we...2020-05-2000 minAiArthritis Voices 360 Talk ShowSpecial Announcement: the Auto Ball is live!Welcome to AiArthritis Voices 360! This week, we are excited to invite you all to join us at the table LIVE for the AUTO BALL, where we sit down with patient Co-Hosts and others from around the world to talk about the important work we are doing to improve global awareness, early detection & diagnosis, precision medicine, and more! You will find our series of live broadcasts on Facebook @IFAiArthritis starting Saturday, May 16th through Wednesday, May 20th. For a complete schedule of events, visit www.aiarthritis.org/autoball and register today!
If you are a patient, a...2020-05-1700 minAiArthritis Voices 360 Talk ShowAt The Table Episode 25: Patients + Doctors = Treatment Decisions ... Right?This week join your host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, as she discusses the inherent desire of patients to make decisions with their doctors regarding treatment decisions without interference from insurance companies or governing agencies.
AiArthritis previously addressed this issue in the United States by leading the Ethics of Step Therapy investigation and concluded that while cost must be considered to ensure the “bucket” of healthcare funds are rationed appropriately, insurance companies justify choosing those low-cost treatments by citing research that has proven the drug is just as safe and effective as other options, prov...2020-05-1417 minAiArthritis Voices 360 Talk ShowEpisode 27: There‘s a Method to Our MadnessThis week join your host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, as she explains the Method to Our Madness! This episode will give you an insider’s view of the AiArthritis organization and the way the AiArthritis Voices 360 talk show fits into the organization’s mission and projects.
In this episode Tiffany revisits one of the first mini-sodes we aired, “The importance of differentiating arthritis types” (November 29th, Mini-Ep2) to demonstrate how we put each topic “on the table” in Step 2 and then revisit it again in Step 5 - after inviting YOU “to the table’ to be part of th...2020-05-1027 minAiArthritis Voices 360 Talk ShowAt The Table Episode 24: E-Health: Taking Our Healthcare Online - What‘s Working and What Isn‘t?This week join your patient co-host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, to discuss the subject of distance medicine and electronic health. Tiffany shares her recent experience with distance medicine as a result of the COVID-19 pandemic and discusses some of the concerns and implications of expanding the use of telemedicine appointments, electronic medical records, and online patient portals.
The mission of AiArthritis is to ensure all patient experiences and perspectives are counted - and are included as equal to all other stakeholders - so, together, we can solve the most pressing problems impacting education...2020-05-0714 minAiArthritis Voices 360 Talk ShowEpisode 26: Global Awareness - Your story can impact changeThis week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, and Pooja Panchamia, founder of the website and online community FieryBones, as they discuss the need for raising global awareness for autoimmune and autoinflammatory arthritis diseases.
FieryBones is a website dedicated to connecting people around the world suffering from autoimmune arthritis and helping them find hope, information, and inspiration. Pooja created it after her Rheumatoid Arthritis diagnosis left her feeling isolated and afraid of what the future would hold. Support groups were not available in India due to a cultural stigma associated with...2020-05-0345 minAiArthritis Voices 360 Talk ShowAt The Table Episode 23: Identities Matter: Pronouns & the Online CommunityThis week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, and Charis Hill, a professionally disabled writer, speaker, and patient advocate as they discuss the sensitive topic of preferred pronouns and misgendering non-binary and transgendered individuals.
Charis is a person who embraces non-binary pronouns (they/them/their) and speaks openly about the emotional experience of being repeatedly misgendered on a daily basis. Tiffany also speaks candidly about the difficulty she has had avoiding the use of binary pronouns even though she is accepting of non-binary people and wants everyone to feel welcome in t...2020-04-3016 minAiArthritis Voices 360 Talk ShowEpisode 25: ONLINE AUTO Ball - Still changing the world from our sofasThis week join your patient co-host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, as she announces a significant change in plans for the AUTO Ball. Listeners may recall that Tiffany announced in Episode 17 of our At The Table series that AiArthritis would be hosting a gala event to kick-off the celebration leading up to World AiArthritis Day on May 20th, 2020. Due to the COVID-19 pandemic, this event, like so many others, must transition to a virtual gathering for the safety of everyone involved.
Since its inception, AiArthritis has So as Effie Koliopoulis recently pointed out in...2020-04-2622 minAiArthritis Voices 360 Talk ShowAt The Table Ep 22 COVID-19 and PetsThis week join your patient host Kelly Conway, co-founder of International Foundation for AiArthritis, as she updates us all on the state of the COVID-19 pandemic as it relates to pets and their owners. Kelly is the author of Making Lemonade with Georgia Grace and has devoted many years to the care and love of her special needs therapy dog, Georgia. For more information about Kelly and Georgia, therapy dogs, and the ways animals can improve the lives of patients living with AiArthritis diseases, check out Episode 4: Pets and Chronic Illness.
In this episode, Kelly gives us...2020-04-2320 minAiArthritis Voices 360 Talk ShowEpisode 24: Ethnic diversity in clinical trials - we are all unique so all voices must be counted!
This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, and Estela and Juana Mata, co-founders of Looms 4 Lupus, as they discuss the current lack of diversity represented in clinical trials and the need to include all demographics in trials so the therapies that go to market are representative of the real patient population who are using them.
Estela and Juana's expertise from symposium and conference attendance, in addition to Juana's personal experience in trials, helps us to understand both the ethnic barriers to participation and why diversity in clinical research i...2020-04-191h 02AiArthritis Voices 360 Talk ShowAt The Table Ep 21: COVID-19 & Gloves - Handy precautions to keep you safeWelcome to this week’s episode of AiArthritis Voices 360: At The Table. This week, join patient co-hosts Danielle and Kristen as they discuss the use of gloves to protect yourself from contracting COVID-19. Do gloves provide added protection from the virus? What is the “right way” to use them? Listen to our conversation about whether to wear gloves and how to wear them if you choose to do so. Then join us in our Facebook COVID-19 group to let us know what choices you are making to protect yourself and your family.
Patient Voices and All Oth...2020-04-1610 min
Medizin - Open Access LMU - Teil 20/22An international registry on autoinflammatory diseases: the Eurofever experienceTo report on the demographic data from the first 18 months of enrollment to an international registry on autoinflammatory diseases in the context of the Eurofever project.2012-07-0100 min