Shows
All Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 37 – AI & Data Science in Angioedema ResearchIn this episode, Thomas welcomes Felix Aulenbacher, a bioinformatician and statistician from ACARE Berlin, to discuss the role of data science, machine learning, and artificial intelligence (AI) in angioedema research. They discuss:🔹 How does data analysis help classify different types of angioedema? 🔹 What role do AI and machine learning play in identifying disease patterns? 🔹 How does the "10 Questions" tool assist in diagnosing angioedema? 🔹 How is AI revolutionizing medical research, and what are its limitations? Felix shares insights on the intersection of bioinformatics and medicine, the challenges of medical data analysis, and how AI is tra...2025-05-0618 min
#BeyondHAE Youth Produced Podcast#BeyondHAE Podcast: Young Advocates on Capitol Hill Fighting for Rare Disease PolicyIn this special episode of the #BeyondHAE podcast, we hear from three passionate young advocates, Zach, Angel, and Arabel who took their voices to Capitol Hill during the EveryLife Foundation’s Rare Disease Week events. Representing the HAEA community, they met with legislators to push for policies that improve the lives of people with rare diseases and their families.Tune in as they share their experiences from the event, discuss the importance of Rare Disease Day, and break down the key issues they advocated for. They’ll also explore ways that you, no matter wher...2025-05-0121 min
All Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 36 – Mortality in HAE: The Silent ThreatIn this episode, Thomas welcomes Dr. Fernanda Minafra, allergist and immunologist at the Federal University of Minas Gerais, Brazil, to discuss one of the most concerning aspects of hereditary angioedema (HAE): mortality. They discuss:🔹 How often do HAE-related deaths occur? 🔹 Why is undiagnosed HAE a major risk factor? 🔹 What do global studies say about mortality rates? 🔹 What can be done to reduce HAE deaths worldwide? Dr. Minafra shares insights from her research, including a systematic review on HAE-related deaths and a study on mortality rates in Brazil. She highlights the urgent need for b...2025-04-0819 min
All Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 35 – Dried Blood Spot: A Game Changer for HAE DiagnosisIn this episode, Thomas welcomes Dr. Jane Wong from Queen Mary Hospital, Hong Kong, to discuss a groundbreaking method for diagnosing hereditary angioedema (HAE) in regions with limited laboratory access. Traditional tests like complement C4, C1 inhibitor levels and C1 inhibitor function are crucial but not widely available in many parts of the world, delaying diagnosis and treatment.They discuss:🔹 What is dried blood spot (DBS) testing? 🔹 How does DBS compare to conventional lab tests? 🔹 Can DBS be used for large-scale screening and family testing? 🔹 What are the limitations and future applications of DBS? ...2025-03-1821 min
All Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 34 – Unraveling Angioedema: The Complexity of HAE and Unknown Variants in CanadaIn this episode, Dr. Thomas Buttgereit speaks with Dr. Adil Adatia about the latest findings on hereditary angioedema (HAE) in Canada, focusing on the challenges in diagnosing and treating patients with normal C1 inhibitor levels. They explore the differences between well-known genetic variants, discuss the average diagnostic delay of over 10 years, and examine treatment approaches, including long-term prophylaxis and the role of estrogen as a trigger. Additionally, they highlight the need for standardized guidelines in diagnosing and managing this condition to better treatment response.Key Learnings from the EpisodeThe average diagnostic delay for hereditary an...2025-03-0620 min
#BeyondHAE Youth Produced Podcast#BeyondHAE Podcast: A Letter to my 10 year old SelfAs we step into March, we’re excited to bring you a brand-new episode of the #BeyondHAE youth-produced podcast! This episode is hosted by 18-year-old Luke, who was diagnosed with HAE at the age of 9, alongside his mom, Mandy, who has been a vital part of his journey.In this special "Letter to My 10-Year-Old Self" episode, Luke reflects on his diagnosis, the challenges he faced, and how his life has evolved since then. He shares the wisdom he has gained along the way and the lessons he wishes he could have told his younger self.Join us as Lu...2025-03-0415 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Meet 2024 Social Media Interns - Jason and TylerIn this episode of the #BeyondHAE youth-produced podcast, we highlight two incredible young HAE caregivers, Tyler and Jason, who have been longtime members of the HAE community. As dedicated advocates for their loved ones, they joined the HAEA social media internship in 2024 to raise awareness about HAE and amplify the voices of those affected. Tyler and Jason share their experiences as caregivers, the challenges they’ve navigated, and their passion for making a difference. Tune in for an inspiring conversation about advocacy, resilience, and the impact of supporting a loved one with HAE.This youth produced podcast is...2025-02-2808 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Meet the Newest Members of the HAEA's Youth Leadership Council Kaylee and KiarraIn this episode of the #BeyondHAE youth-produced podcast, we connect with Kaylee and Kiara, two passionate advocates whose lives have been shaped by hereditary angioedema (HAE). Both Kaylee and Kiara have been living with HAE and understand the challenges of managing a rare disease. Now, as new members of the HAEA Youth Leadership Council, they are eager to use their voices to empower and support other young people in the HAE community. Tune in for an inspiring conversation about resilience, leadership, and the importance of sharing your story to create meaningful connections.This youth...2025-02-1409 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Meet HAEA Youth Leadership Council Members - Kati and EllaIn this episode of the #BeyondHAE youth-produced podcast, we connect with Ella and Kati, two passionate advocates whose lives have been shaped by hereditary angioedema (HAE). Ella, a devoted caregiver to her mother, shares her perspective on supporting a loved one with HAE and the impact it has had on her journey. Kati, who has been living with HAE since childhood, reflects on her experiences, the obstacles she has faced, and the strength she has found within the HAEA community. As new members of the HAEA Youth Leadership Council, both Ella and Kati are committed to raising awareness and...2025-02-0310 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Meet the Newest Members of the HAEA's Youth Leadership Council Cassidy and SkylarIn this episode of the #BeyondHAE youth produced podcast, we connect with Skylar and Cassidy, two remarkable individuals whose lives have been shaped by hereditary angioedema (HAE) in different ways. Skylar, a dedicated caregiver to her mother and sister, shares her experiences of supporting her family members with HAE. Cassidy, diagnosed with HAE two years ago, reflects on her journey, the challenges she has overcome, and the support she has found within the HAEA community. Together, they offer powerful insights into resilience, caregiving, and the strength of the HAE community. Tune in for an inspiring conversation about perseverance, connection...2025-01-3109 min
All Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 32 – NSAID hypersensitivityHow do we identify people with non-steroidal anti-inflammatory drug (NSAID)-induced angioedema? Dr Thomas Buttgereit welcomes Dr Stefan Cimbollek to discuss NSAID hypersensitivity in people with angioedema, including clinical manifestations and management strategies.
For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: An algorithm for the diagnosis and treatment of nonsteroidal anti-inflammatory drugs hypersensitivity, 2024 update; Approaches to the diagnosis and management of patients with a history of nonsteroidal anti-inflammatory drug-related urticaria and angioedema.2025-01-2726 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Meet 2024 Social Media Intern - KailaniIn this episode, we sit down with Kailani, a dedicated caregiver to her mother living with hereditary angioedema (HAE). Kailani shares her unique perspective on balancing caregiving responsibilities with her personal goals and how her experiences have shaped her outlook on life. As an HAEA social media intern in 2024, Kailani also discusses her involvement with the HAEA community and the importance of raising awareness about HAE. Tune in to hear her inspiring story of compassion, resilience, and the power of connection within the HAE community.
This youth produced podcast is brought to you thanks to the support...2025-01-1710 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Meet HAEA Youth Leadership Council Members - Caroline and AveryThe #BeyondHAE youth-produced podcast kicks off January 2025 with an exciting series of episodes spotlighting the newest members of the Youth Leadership Council who joined in 2024. Meet Caroline, who was diagnosed with HAE as a young child, and Avery, a dedicated caregiver for her brother. Both joined the YLC in 2024 and are excited to serve as leaders in the HAE community. With new episodes releasing weekly throughout January and February, listeners will get to know these inspiring young leaders and discover what fuels their passion for HAE advocacy.
This youth produced podcast is brought to...2025-01-1009 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Meet the HAEA's Youth Leadership Council's Newest Member SullyThe #BeyondHAE youth-produced podcast kicks off January 2025 with an exciting series of episodes spotlighting the newest members of the Youth Leadership Council who joined in 2024. This episode features Sully, a dedicated caregiver to his mother who has HAE, as he shares his unique perspective and experiences in the HAE community. With new episodes releasing weekly throughout January and February, listeners will get to know these inspiring young leaders and discover what drives their passion for HAE advocacy.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association...2024-12-3010 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 29 – Global Angioedema Forum 2024The Global Angioedema Forum 2024 presented an opportunity to bring together medical specialists, patients, and caregivers from around the world to share their experiences of the management and diagnosis of angioedema. Dr Thomas Buttgereit considers the most poignant discussion points from the event, while Dr Dharmagat Bhattarai summarises some of the challenges he faces working in a clinical setting with limited resources.
For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/.2024-11-2021 min#BeyondHAE Youth Produced Podcast#BeyondHAE Podcast: A Day in the Life - Jasmeen's Journey of ResilienceIn this episode of the #BeyondHAE podcast, HAEA Youth Leadership Council member Carlie chats with Youth Advocate Jasmeen about her personal journey with HAE. Diagnosed as a teenager, Jasmeen shares how she has learned to manage her condition while balancing the demands of school, work, and everyday life. Tune in to hear an inspiring conversation about resilience, growth, and navigating life with HAE.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community...2024-11-0418 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 27 – Emergency room care: A rapid HAE triage toolHow can emergency physicians quickly recognise HAE in patients who present with acute angioedema? Dr Thomas Buttgereit explores a new “easy-to-apply” triage tool with guest Dr Stephen Betschel, who, with his team in Toronto, developed this tool to enable rapid identification of HAE and appropriate intervention in the emergency room setting.
For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Development of the hereditary angioedema rapid triage tool; Could it be hereditary angioedema?—Perspec...2024-10-0219 min#BeyondHAE Youth Produced Podcast#BeyondHAE BONUS Episode: Empowering Youth Voices: Ally & Luke's Journey in Legislative AdvocacyIn this special Youth Advocacy Month episode, join host Kobe as they sit down with HAEA Youth Advocacy Network Regional Leaders, Ally and Luke, to discuss their impactful experiences as young advocates during HAEA's Capitol Hill Day and advocacy training workshops. Ally and Luke share what it’s like to participate in legislative visits, why it’s crucial for young people to be involved in advocacy, and how their passion for legislative change drives their work in the HAE community. As seasoned advocates, they open up about their journey, the challenges they've faced, and the lasting impact they aim to m...2024-10-0217 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 26 – HAE and plasminogen mutationWhat are the clinical signs, symptoms, and pathomechanisms of HAE caused by a plasminogen mutation, a recently identified cause of HAE with normal C1 inhibitor activity? Dr Thomas Buttgereit and Dr Andreas Recke discuss this rare type of recurrent HAE, which can manifest for the first time in older adults, and note how “this is atypical for a genetic disease – normally, genetic diseases are hard-wired”.
For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: I...2024-09-1117 min#BeyondHAE Youth Produced Podcast#BeyondHAE: A Day in the Life of ZachIn this episode of the #BeyondHAE podcast, hosted by Youth Leadership Council Member Noah, Zach shares his journey with HAE, which began when he attended his first HAEA event at the young age of 9. Thirteen years later, Zach has built lifelong friendships and developed essential advocacy skills that have shaped who he is today. Known by many for his regular involvement in HAEA programs and events, Zach discusses living with HAE, the importance of taking his medication on time, and how he manages HAE in his daily life. Don’t miss this insightful installment of the #BeyondHAE Day in th...2024-08-3016 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 25 – Acute treatment of HAE attacksProfessor Marc Riedl, Dr Danny Cohn, and host Dr Thomas Buttgereit consider why "there are quite a few patients who delay their on-demand treatment”, and discuss orally active agents under investigation that may help to overcome the barriers to timely treatment.
For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: The international WAO/EAACI guideline for the management of hereditary angioedema; US HAEA medical advisory board 2020 guidelines for the management of hereditary angioedema; and...2024-08-2717 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 24 – Genetic testing in HAE: Behind the scenesWhen is genetic testing required in the diagnostic workup of recurrent angioedema? Dr Thomas Buttgereit talks genetic tests for HAE with Professor Roger Colobran Oriol, covering the types of samples that can be used, current technologies, and how results are interpreted.
For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Genetics in the management of HAE; C1 inhibitor mutations in HAE; and the expanding spectrum of mutations in HAE .2024-08-1317 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 21 – Angioedema: A South African perspectiveAssociate Professor Jonny Peter joins Dr Thomas Buttgereit to discuss angioedema in South Africa, including the burden of disease for patients, the importance of patient education, and the success of advocacy for access to targeted treatments.
For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: South African Virtual Angioedema Centre; University of Cape Town Lung Institute, Allergy and Immunology Unit; and Fresh frozen plasma for on-demand hereditary angioedema treatment in South Africa and I...2024-07-0224 min#BeyondHAE Youth Produced Podcast#BeyondHAE Podcast: A Day in the Life of SanyuCheck out the latest #BeyondHAE podcast episode hosted by Kobe, featuring special guest Sanyu! Diagnosed with HAE as a child, Sanyu shares the challenges she faced growing up with the condition, her experience participating in a clinical trial, and how she now manages her life as a young adult on preventative medication.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support...2024-07-0128 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 20 – EAACI 2024 reflectionsDr Thomas Buttgereit asks Dr Clemens Schöffl about EAACI Congress 2024 highlights, which include early data on outcomes of CRISPR-based gene editing of KLKB1 in people with HAE.
For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: EAACI Congress 2024 – Breakthroughs in management of hereditary angioedema; CRISPR-Cas9 in vivo gene editing of KLKB1 for hereditary angioedema; Clinical experience with berotralstat in patients with hereditary angioedema with normal C1-esterase inhibitor: A commented case series.2024-06-1821 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 19 – Pregnancy in HAEDr Thomas Buttgereit welcomes Dr Teresa Caballero to discuss HAE in pregnant women, including the possible reasons for increased attacks and recommended treatment options.
For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: How does pregnancy and type of delivery affect the clinical course of hereditary angioedema?; and Successful pregnancy outcome in a hereditary angioedema patient with previous pregnancy losses: A proposed delivery plan.2024-06-0420 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 18 – Factor XII mutation in HAEProfessor Anete Grumach joins Dr Thomas Buttgereit to discuss factor XII mutation in people with HAE, including the reasons for the high prevalence in females and recommended genetic tests.
For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Homozygosity for a factor XII mutation in one female and one male patient with hereditary angio-oedema; CpaA is a glycan-specific adamalysin-like protease secreted by Acinetobacter baumannii that inactivates coagulation factor XII; and Angioedema with normal com...2024-05-2121 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 17 – Unmet needs for HAE in AsiaDr Thomas Buttgereit welcomes Dr Philip Li to discuss the unmet needs of people with HAE in Asia, including the lack of consensus guidelines for the management of HAE, the lack of suitable diagnostic tools, and limited access to treatment.
For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Epidemiology, management and treatment access of hereditary angioedema in the Asia pacific region; Screening for type II hereditary angioedema; and Hong Kong-Macau severe hives an...2024-05-0719 min#BeyondHAE Youth Produced Podcast#BeyondHAE Podcast: A Day in the Life of Caregiver KailaniJoin us in the latest episode of the #BeyondHAE podcast, where Noah, an HAEA Youth Leader, engages in a heartfelt conversation with Kailani, a dedicated caregiver to her mother living with Hereditary Angioedema (HAE). In this edition of the Day in the Life interview series, Kailani openly shares the unique challenges and victories experienced by young caregivers navigating the complexities of supporting their adult parents with HAE.
Listen as Kailani reflects on the transformative effects of her mother's reliable therapy, discussing the shifts in her caregiving role. She sheds light on how discovering the supportive HAEA community has not...2024-05-0223 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 16 – ACE inhibitor-induced angioedemaEar, nose and throat specialist Dr Robin Lochbaum joins Dr Thomas Buttgereit to discuss angiotensin-converting enzyme (ACE) inhibitor‑induced angioedema, including information on the incidence and mechanism of action, and antihypertensive treatment options.
For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Concomitant medication in patients with bradykinin-mediated angioedema – there’s more than ACE inhibitors; The role of angiotensin receptor blockers in patients with angiotensin-converting enzyme inhibitor-induced angioedema; and Angiotensin II receptor blockers are saf...2024-04-0916 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 15 – Mast cell-mediated angioedema“Should it be considered a part of chronic spontaneous urticaria?” Dr Thomas Buttgereit welcomes Dr Marta Ferrer Puga to talk about mast cell-mediated angioedema, including discussion of the international urticaria guidelines definition.
For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: A comparative study of sex distribution, autoimmunity, blood, and inflammatory parameters in chronic spontaneous urticaria with angioedema and chronic histaminergic angioedema; Angioedema severity and impact on quality of life: Chronic histaminergic angioedema versu...2024-03-2622 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 14 - Collaboration in HAE“There are a lot of doctors that should know about angioedema.” Ear, nose and throat specialist Dr Janina Hahn joins Dr Thomas Buttgereit to discuss the importance of implementing an interdisciplinary approach in HAE, including tips on overcoming challenges.
For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/.2024-03-1224 min#BeyondHAE Youth Produced Podcast#BeyondHAE Podcast: A Day in the Life of CarolineDive into the latest episode of the #BeyondHAE podcast as we continue our Day in the Life interview series, featuring our special guest, 14-year-old Caroline. Diagnosed with HAE as a young child, Caroline shares her journey of managing HAE, discussing how she navigates attacks, administers medication, and handles situations as they arise, all while juggling middle school and pursuing her extracurricular passions. Join our host, HAEA Youth Leader Carlie, as she delves into Caroline's experiences growing up with HAE.
This youth produced podcast is brought to you thanks to the support of the Hereditary...2024-03-0415 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 13 – Angioedema in the paediatric population“Children should be informed about their illness according to their age.” Professor Henriette Farkas joins Dr Thomas Buttgereit to discuss angioedema in children, covering acute treatment options and the differing symptoms between adults and children.
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For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Results from the phase 3 SPRING study; International consensus on the d...2024-02-1319 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 11 – The perspective from India in treating paediatric patientsDr Thomas Buttgereit is joined by Professor Ankur Kumar Jindal to discuss his experience as a paediatrician treating angioedema in India, covering the reoccurring challenges and how best to counsel families when discussing the risk of transmission to the next generation.
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For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: P-49 Transmission p...2024-01-1120 min#BeyondHAE Youth Produced Podcast#BeyondHAE Podcast: A Day in the Life of BrynWe are thrilled to introduce a fresh new interview series on the #BeyondHAE podcast! Our "Day in the Life" episodes will delve into the experiences of young individuals with HAE, spanning from diagnosis to treatment management and their everyday routines. In this episode, we shine the spotlight on Bryn who was diagnosed at 16. HAEA Youth Leader Kobe takes the reins, guiding us through a Day in the Life of Bryn.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs...2023-12-2927 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 10 – Who is behind the scenes of ACARE?Dr Thomas Buttgereit is joined by Julia Föll and Reinhardt Britz to discuss the responsibilities of working within an ACARE office, covering audit criteria and ongoing ACARE projects.
Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here.
For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Become an ACARE, ACARE LevelUp: The ACARE physician information and education platform and Programme fo...2023-12-2917 min#BeyondHAE Youth Produced PodcastSponsored by BioCryst: HAE, the holidays and you. Navigating the holiday season with HAESenior Nurse Advocate with over 20 years of experience working with HAE patients will discuss tips and recommendations for successfully navigating the busy holiday season with HAE
For more information about Hereditary Angioedema please visit HAEA.org
This episode is brought to you by our sponsor: BioCryst Pharmaceuticals, Inc.2023-12-1907 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 9 – The AURORA study“In the past, they’ve used 72 different combinations of outcomes and outcome measures.” Remy Peterson joins Dr Thomas Buttgereit to discuss the need for the AURORA study, and shares the resulting consensus for acute treatment outcomes in HAE.
Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here.
For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/.
Additional resources relating to the topics discussed in this episode can be found here: The registered study protocol: AcUte tReatme...2023-12-1422 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 8 – The future of angioedema: Is there a cure on the horizon?Join Dr Lauré Fijen and Dr Thomas Buttgereit as they discuss emerging angioedema treatments, covering efficacy, safety, frequency and route of administration. The experts also reflect on the possibility of a cure for HAE.
Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here.
For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Hereditary angioedema: The clinical picture of excessive contact activation an...2023-12-0519 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 7 – Treating hereditary angioedemaJoin Professor Anna Valerieva and Dr Thomas Buttgereit as they discuss the burden of living with rare forms of angioedema, particularly HAE. Drawing from her expertise as an allergologist at the Medical University of Sofia, Bulgaria, Professor Valerieva emphasises the importance of viewing patients holistically and considering their preferences. The experts also review how the introduction of new treatments has changed patients’ lives and minimised recurrent angioedema attacks.
Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here.
For more information about the Global Allergy and Asthma Excellence Network...2023-11-1520 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 6 – Tackling acquired angioedema and related comorbiditiesJoin Dr Andrea Zanichelli and Dr Thomas Buttgereit as they discuss complex angioedema cases, including acquired angioedema diagnosed in later life. Drawing from his perspective as Head of the Angioedema Center in Milan, Italy, Dr Zanichelli explores how C1 and C4 inhibitor deficiencies may indicate a possible acquired angioedema diagnosis, common comorbidities due to this condition, and the current treatment options available.
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For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, p...2023-11-0321 min
#BeyondHAE Youth Produced Podcast#BeyondHAE Digging Deeper Interview Series: The Parent Perspective (Nikia)This month's #BeyondHAE Digging Deeper Interview Series features HAEA Youth Leadership Council Member Sophia who interviews Kia who is both diagnosed with HAE but who is also a caregiver to her son Noah. This episode focuses on Kia's expereinces as a parent caring for her son Noah.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
Thank you t...2023-11-0125 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 5 – An ENT view of angioedemaJoin Dr Antonia Scherer and Dr Thomas Buttgereit as they discuss the impact of recurrent hereditary angioedema on the larynx. Drawing from her perspective as an ENT expert, Dr Scherer explores how laryngeal angioedema is assessed in the clinic, and the current treatment options available.
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For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be f...2023-10-2323 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 4 – Androgens in hereditary angioedemaDr Thomas Buttgereit is joined by Dr Carolina Vera to discuss the use of attenuated androgens in the treatment of hereditary angioedema and their associated risks and side effects. Both exerts delve into the safety, ethical considerations and alternative treatment options to using androgens for the treatment of hereditary angioedema. Dr Vera concludes the discussion with an in-depth explanation of the SHAERPA project, focusing on the discontinuation of androgen use in individuals with angioedema, and the benefits this project can have in providing guidance on alternative medications.
Do you have suggestions for future episodes? Please provide feedback and offer your...2023-10-0617 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 3 – Angioedema and EAACI 2023Professor Jason Fok joins Dr Thomas Buttgereit to discuss angioedema updates from the European Academy of Allergy and Clinical Immunology (EAACI) Congress 2023 and the role EAACI has in disseminating novel insights in angioedema treatment and diagnosis. Dr Buttgereit takes a deep dive into how data presented at EAACI congresses can be implemented into specialist ACARE clinics and the benefits the congress has in aiding clinicians to implement the latest guidelines for the benefit of patients.
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For more information about...2023-09-1518 min#BeyondHAE Youth Produced Podcast#BeyondHAE Digging Deeper Interview Series: Overcoming Barriers to Pursue A Passion for Filmmaking (Natalie)This month's BeyondHAE Digging Deeper Interview Series features HAEA Youth Leadership Council member Noah who interviews Natalie, a award winning filmmaker who has HAE. In this episode, Natalie talks about what it was like for her growing up with HAE, and how she pushed beyond her diagnosis to achieve her goal of becoming a filmmaker and starting a family. This is Natalie's story.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more...2023-08-3038 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 2 – What is angioedema and what is not?Dr Thomas Buttgereit is joined by Professor Markus Magerl, leader of the angioedema clinics at ACARE Berlin. Their conversation explores the clinical features of recurrent angioedema and the essential differential diagnoses that dermatologists must bear in mind when encountering facial swellings.
Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here.
For more information about the Global Allergy and Asthma Excellence Network - ACARE network and its activities, please visit https://acare-network.com/. Additional resources relating to the topics discussed in this episode can be found here: Classification, diagnosis, a...2023-08-2121 minAll Things Angioedema – Learning about angioedema with Dr. Thomas ButtgereitEpisode 1 – What “angioedemologists” do and what motivates themDr Thomas Buttgereit welcomes the renowned urticaria specialist, Professor Marcus Maurer. Professor Maurer is the founding force behind both ACARE and UCARE, and spearheads the popular podcast, All Things Urticaria. The pair delve into the significance of angioedema across all areas of medicine and offer insights into the role and responsibilities of angioedemologists. They also shed light on the complexities of tackling angioedema, highlighting the invaluable role of the ACARE global network in tackling these challenges.
Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here.
For more information...2023-08-1619 min
#BeyondHAE Youth Produced Podcast#BeyondHAE Digging Deeper Interview Series: Studying Abroad with HAE (Nathan)The #BeyondHAE Digging Deeper Interview series continues this month with our guest, Nathan who chats with HAEA Youth Leadership Council Member Noah about what it's been like for him growing up with HAE. Nathan joined us from his study abroad program in Switzerland where he is attending college. Nathan discusses what it's been like studying abroad with HAE and what he did to prepare for his time away from home. If you're thinking about traveling internationally or applying for a study abroad program, you won't want to miss this episode! This is Nathan's story.
...2023-07-0118 min
Emergency Medical MinutePodcast 852: Angioedema After ThrombolysisContributor: Aaron Lessen, MD Educational Pearls: What is thrombolysis? Thrombolysis is performed by administration of a medication that promotes the body’s natural ability to break up clots. These medications include Alteplase (tPA) and Tenecteplase (TNK). The main side effect of using such an agent is bleeding which typically occurs at puncture sites but can also occur internally. However, an unusual side effect of thrombolytic agents, which occurs in about 1-5% of cases, is angioedema. What is angioedema? Angioedema is a medical condition that causes swelling beneath th...2023-05-2202 min
#BeyondHAE Youth Produced Podcast#BeyondHAE Digging Deeper Interview Series: My caregiver journey (Eliana)The #BeyondHAE Digging Deeper Interview series continues this month with our guest, HAEA Youth Caregiver Eliana who has grown up supporting her older sister who has an HAE diagnosis. Eliana talked with Youth Leadership Council member Kobe about the personal challenges that she encountered as her older sister was searching for a diagnosis. It's not easy watching your sibling suffer through mis-understood symptoms but Eliana found a way to comfort her sister during those difficult times. Today, they are closer than ever and Eliana has joined her sister in advocating for a better future for people with HAE. This...2023-05-0125 min
#BeyondHAE Youth Produced Podcast#BeyondHAE Digging Deeper Interview Series: I am a young adult with HAE (Mariel)Continuing with the #BeyondHAE Digging Deeper Interview Series, this month's episode is hosted by Youth Leadership Council member, Kobe who interviews Mariel, a young woman with HAE who talks about growing up with unexplained symptoms and her journey to finally getting a diagnosis in her 20s. She talks about how she has adjusted her outlook on life to find the positive in being part of the rare disease community. This episode is now available to watch in video format on Spotify.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema...2023-02-2726 min
#BeyondHAE Youth Produced Podcast#BeyondHAE Digging Deeper Interview Series: My brother has HAE (Avery)We kick off the year with a new series of the #BeyondHAE podcast called "Digging Deeper". Each episode in the series will feature an interview from either someone diagnosed with HAE or someone whose loved one is diagnosed as we dig deeper into their experiences with HAE. This episode is hosted by HAEA Youth Leadership Council member Sophia who interviews 10 year old Avery. Avery is a caregiver to her older brother Jack who has HAE. Avery talks about what it's been like for her to support her brother on his HAE journey, and highlights how she has gotten involved t...2022-12-3014 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: HAEA Round Table: Young Adults (Kayla, Jack, and Morgan)As we wrap up the year, we are thrilled to welcome three young adults with HAE to share their experiences living with a rare chronic condition. This episode was recorded as part of the HAEA Round Tables and covers topics ranging from overcoming challenges at school, coping with HAE through puberty, dating and relationships, and more. Listen now to hear directly from young adults who share stories about their personal triumphs and challenges as they navigate life with HAE.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a...2022-12-0239 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: My HAE Diagnosis and Management Journey (Ally)Ally is our host for this month's episode of the #BeyondHAE Podcast series. Ally goes into detail as she talks about the ups and downs of her personal HAE journey and how she navigated through school while managing her condition. She talks about how getting involved in the HAEA youth community and advocating for the condition has impacted her life and helped her to feel more comfortable with her diagnosis.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE...2022-10-3107 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Commemorating HAE Youth Advocacy Month with a talk about advocacy and awarenessThis month's episode is all about advocacy and awareness as we head into October and kick off HAE Youth Advocacy Month. We hear from three HAEA Social Media interns, Ally, Gabby, and Morgan who talk about how their desire to learn about advocacy and raise awareness about HAE resulted in building lifelong bonds with a community of people who understand their journey. The girls talk about the importance of advocacy and how it's impacted each of them personally.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient...2022-09-2813 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Preparing for Back to School (Lisa & Hannah)Back to school season is an important time for all kids, but for kids with Hereditary Angioedema, this time of the year also means educating new teachers about HAE, creating an emergency plan incase an attack happens at school, and managing stress that comes with a new schedule and new expectations. In this episode, we review the collection of useful resources available to help kids and families during this time and we hear from former student Hannah who talks about how she managed her HAE while in school. We have linked several of the resources discussed in the description...2022-08-3109 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: I Use Social Media to Advocate for HAE (Maddie)This month's episode is hosted by Maddie who talks about how she uses social media to raise awareness and advocate for HAE. She also provides some tricks and tips for others looking to advocate on social media.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
Thank you to our sponsors BioCryst and Takeda.2022-08-0103 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: HAEA Round Table: Anxiety, Stress, and Growth with HAEThis month's episode of the #BeyondHAE podcast features two young people with HAE between the ages of 12 and 15 who talk about anxiety, stress, and growth with HAE. This Round Table featured topics like how to talk about your HAE with others, how it feels to have an HAE diagnosis, how to tell when an attack is coming on, and how to manage fear of needles. Our two participants, Lexi and Layna, also talk about advice they would give to other kids who were recently diagnosed with HAE. Listen now to hear insight from kids with HAE!
This...2022-07-0125 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Managing my HAE in Middle School (Paige)Episode 39 welcomes youth host Paige, who talks about how she copes with her attacks and her experience with attacks while in middle school. She talks about how she has overcome embarrassment and interviews a couple friends who talk about how they support Paige when she swells. Paige wraps up her episode with some advice to others who are not comfortable sharing their HAE diagnosis with others.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community...2022-05-3105 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: HAEA Round Table: How Does It Feel to Be a Kid with HAE?This month's episode of the #BeyondHAE podcast features four young people with HAE between the ages of 7 and 11 who talk about what it's like to have HAE. These young individuals discussed relevant topics such as what it’s like for them to grow up with HAE, the fear of needles, discussing their HAE diagnosis with teachers and friends, and more!
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA an...2022-05-0220 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: An Interview with Lisa Facciolla (Sydney & Lisa)This month's episode of the #BeyondHAE Youth Podcast features HAEA Youth Advocate Sydney, who interviews HAEA Engagement Specialist, Lisa Facciolla who talks about her life with HAE, challenges that she overcame, and how she found independence through self-administration.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
Thank you to our sponsors BioCryst and Takeda.2022-03-2808 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Learning to feel comfortable with my condition (Zanya)Episode 36 is hosted by Zanya who talks about her diagnosis journey and some of the challenges she encountered along the way. She talks about how getting involved in HAE advocacy and awareness has helped her come out of her skin and feel more comfortable sharing her diagnosis with people in her life.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www...2022-02-2809 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: HAE and Dating (Kelsey and Matt)In this episode of the #BeyondHAE podcast, Kelsie talks about how she approached introducing her diagnosis to her partner Matt who joins in as a guest host. She talks about the ways that he supports her in her diagnosis and he talks about what it means to him to support his partner.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www...2022-01-3108 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: The first in my family with HAE (Kira)In this month's episode of the #BeyondHAE podcast, Kira talks about diagnosis journey as the first person in her family to be diagnosed with HAE. She talks about growing up with the condition and eventually the hurdles that she overcame to move away from home to attend college.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea...2022-01-0306 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Finding Comfort in Community (Jess and Hannah)In this month’s episode of the #BeyondHAE Youth Podcast, we invite you to listen to Jess and Hannah’s story. They describe how meeting someone else their age with HAE changed their outlook on life and helped them to feel validated in their struggles with the rare chronic illness.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
2021-11-3019 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: How Advocacy and Awareness Has Impacted My Life (Emma)In episode 33, Emma shares her personal HAE journey and talks about how getting involved in the HAEA community has helped her better cope with her diagnosis.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
Thank you to our sponsors BioCryst and Takeda.
2021-10-2904 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Moving Away for College (Kobe)Moving away from home to go to college can be a big adjustment for everyone, however, it can be a particularly big move for someone with HAE. Tune in to this month's #BeyondHAE podcast to hear how Kobe adjusted to college life away from home. Part of his new responsibilities involved receiving, managing, and taking his medication while at college. This episode is one you won't want to miss if you're planning to move away from home or make a major life transition.
This youth produced podcast is brought to you thanks to the support of the...2021-10-0408 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Never Give Up (Karissa)This month's episode of the #BeyondHAE podcast is hosted by Karissa who shares her personal HAE story of perseverance and hope. Karissa experienced years of mis-diagnosis and had moments when her hope for a better future was dissipating, but Karissa never gave up. She pushed forward, and today continues to reach her goals and pursue her dreams.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our...2021-09-0108 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Living #BeyondHAE with the HAEi Youngsters (Nanna, Erini, Isabel, and Nevena)We are excited to welcome members from the HAE International Youngsters community as the hosts for this episode. Nanna, Erini, Isabel, and Nevena represent countries from all corners of the world as they talk about what it means to them to live #BeyondHAE. As you listen to this episode we ask that you reflect on your own story and what it means to you to live your life #BeyondHAE.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient...2021-08-0419 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: How I Support Team Jack (Ally)Episode 29 is hosted by Ally whose younger brother, Jack has HAE. In this episode, Ally talks about how her and her family support Jack and his HAE by coming together to host fun events and activities.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
Thank you to our sponsors BioCryst and Takeda.2021-06-3003 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: We are Caregivers (Ava)Episode 28 is hosted by Ava who welcomes her mom, Sherry to talk about what it's like to care for and support Ava's younger sister Lillian who has HAE. There have been some challenging times, but together they have been there to support Lillian through her diagnosis, treatments, and management of her HAE.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www...2021-06-0106 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Understanding Anxiety (Carlie)Many people with HAE experience anxiety. Episode 26 is hosted by Carlie who talks about managing and understanding anxiety while living with HAE, as well as letting listeners know they aren't alone in their struggles.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
Thank you to our sponsors BioCryst and Takeda.
2021-04-3004 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Chat with my Mom: Managing Life's Changes (Sophie)Episode 26 is hosted by Sophie and her mom, Melanie. This episode is about learning to manage changes in life while managing HAE. Life changes are inevitable and learning effective coping strategies is important to ensuring that you are able to navigate those changes while still effectively managing your HAE.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.
2021-04-0512 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Modern HAE medication has allowed me to live #BeyondHAE (Sophia)Episode 25 is hosted by Sophia who lives in Connecticut. Beyond her HAE, Sophia runs track and is passionate about improving her times and advancing in her sport. She talks about how modern HAE therapies and the successful management of her disease has resulted in her having the best year yet in track. Sophia is an incredible example of a young women who has not let her HAE hold her back from excelling in the sport she loves!
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy...2021-03-0207 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Interview With My College Roommate (ReyJeanne)Episode 24 is hosted by ReyJeanne and her friends from college. They talk about supporting ReyJeanne through some of the challenges that she experienced in college. From learning how to give emergency medication, supporting you during stressful times, and knowing your emergency plan, friends can play a big part in supporting you on your HAE journey. Don't miss this amazing episode that provides a glimpse into what it's like to be in college while managing your HAE.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization...2021-02-0112 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: 5 Years Can Make a BIG Difference (Luke)Episode 23 is by Luke. This episode is all about Luke's HAE journey. From diagnosis, getting access to medication, insurance denials to getting involved in the HAEA youth programs and making life long friendships. Now Luke is participating in a clinical trial, paving the way for advances in medication options for other people with HAE. Luke's story is all about overcoming challenges to achieve his goal of living life #BeyondHAE.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient...2020-12-3004 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: My Emergency Room Experiences (Jack)Episode 22 is hosted by Jack from New Jersey. Jack talks about his many trips to the ER and shares some stories about his experiences there. ER trips can be stressful and emotionally draining, but advocating for yourself and your needs is an important lesson that can reduce unnecessary procedures and wait times.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support...2020-11-3003 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: HAE and Sports (Noah)Noah is an athlete and in this episode, he talks about what he does to make sure that HAE doesn't stop him from participating in the sports he loves.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.2020-10-3005 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Talking to friends about HAE (HAEA YLC)This episode is all about telling people in your life about your HAE. Hear from members of the HAEA Youth Leadership Council as they discuss everything from telling friends about HAE to coaches and teachers. Sometimes it's hard for our peers to understand, but other times, our friends surprise us with how supportive they can be.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and...2020-10-3008 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Managing Stress (Ava)Episode 19 is hosted by 10 year old Ava from California. Ava talks about the impact that stress has on her HAE attacks. She shares some strategies that she's learned over the years to cope with stress.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.2020-10-0105 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Art is my Therapy (Gabriela)Episode 18 is hosted by Gabriela from California. Gabriela shares her personal HAE story and talks about how art has helped her get through difficult times.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.2020-10-0108 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Maddie's StoryThis episode is hosted by Youth Leadership Council member and HAEA Social Media Intern, Maddie. In this episode, Maddie shares her HAE journey, from her diagnosis and many hospital visits, to becoming part of the HAEA Youth community and advocating for the HAE community on Capitol Hill.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.2020-08-3108 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Being Different is Normal (Kobe)This episode is hosted by Kobe from Georgia. Kobe asks the question, what does it mean to be normal? As a young person with a chronic disease, many of us understand that we are a little different from our peers. As Kobe describes in this episode, being different is actually more normal than many of us realize.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our...2020-08-3108 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Back to School Tips with the HAEA Youth Leadership CouncilThis special BONUS episode of the #BeyondHAE podcast is a roundtable discussion with the HAEA Youth Leadership Council. Hear from members of the HAEA Youth community as they share some of their back to school tips and tricks.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.2020-07-2908 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Advocating for yourself at school (Gabriela P.)This episode of the #BeyondHAE Podcast hosted by Gabriela who talks about why it is important to speak up for yourself at school. While it’s not always easy to talk to the administration at school about your HAE, it’s important.
If you'd like more information about 504 plans, here is the link that is referenced in Gabriela's episode: https://www.understood.org/en/school-learning/special-services/504-plan/7-steps-to-getting-a-50 4-plan-for-your-child
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE...2020-07-2908 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Independence and Self-Administration (Sophia)Episode 11 of the #BeyondHAE podcast is hosted by 16 year old Sophia, from Connecticut. This episode is all about Sophia’s road to independence and control over her HAE attacks. She talks about how self-administration has contributed to feeling confident and managed, and how finding the right medication has impacted her HAE story.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support ne...2020-07-0105 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Travel Tips (Kyleigh)This episode is hosted by 18 year old Kyleigh, from Texas. Kyleigh’s episode is all about travel tips to make traveling smooth and easy for people with HAE.. Although many of us might not be traveling at this time, it’s important to be prepared when you leave home for any amount of time. Tune into Kyleigh’s episode to learn more about how you can prepare if you must travel.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs...2020-06-2505 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Interview with my Mom (Carlie)Episode 10 is hosted by Carlie from Louisiana. In this episode Carlie interviews her mom Mary, and they talk about everything from how they support each other to navigating relationships and friendships. Carlie and Mary provide some tips to support young people in relationship building with peers.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.h...2020-06-0307 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: The Impact of COVID-19 on our lives and our HAE (HAEA Youth & HAEi Youngsters Collaboration)BONUS Episode! The HAEA Youth and the HAEi Youngsters have come together to collaborate on this special episode of the #BeyondHAE Podcast. This roundtable discussion is all about the impact that COVID-19 (Coronavirus) has had on the lives of young people with HAE around the world. Hear from young adults living in South Africa, Greece, and the US about how their lives have been impacted by this unprecedented international crisis.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE...2020-05-2222 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Navigating Friendships and HAE (Jasmeen)Episode 9 is hosted by Jasmeen, from New Mexico. This episode is all about navigating friendships. Jasmeen talks about her experience telling her peers about HAE and how sometimes this experience unveiled false friends. But there are lessons to learn with every experience and Jasmeen shares how this experience has taught her important lessons along the way.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible...2020-05-1804 min#BeyondHAE Youth Produced Podcast#BeyondHAE: Anxiety and HAE (Jack)Episode 8 of the #BeyondHAE Podcast is hosted by 14-year-old Jack from New Jersey. Jack’s HAE attacks have always been pretty manageable until he experienced his first throat swell and began to feel overwhelming anxiety as a result. Listen to May’s #BeyondHAE podcast episode to hear Jack’s story and how he learned to overcome his anxiety.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our in...2020-04-2904 min#BeyondHAE Youth Produced Podcast#BeyondHAE: How I Advocate for HAE (Stephen)Episode 7 is hosted by Stephen, from Ohio. Stephen’s dad and his little sister Abby both have HAE; and although Abby has yet to have her first attack, Stephen has realized that he can help her have a brighter future by participating in HAE advocacy. In this episode of the #BeyondHAE podcast, Stephen talks about a few of the fun ways that he raises awareness about HAE and how he has become a proud HAE advocate.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization se...2020-03-3004 min#BeyondHAE Youth Produced Podcast#BeyondHAE: My role as a caregiver to my little sister (Ava)Episode 6 is hosted by Ava, who is a caregiver to her little sister who has HAE. In this episode, Ava provides insight into how she has supported her little sister during her HAE journey. While coping with a family member with a chronic health condition isn't easy, there are often times important lessons that are learned along the way. It’s important to remember that undiagnosed family members (caregivers) often play a big role in supporting their diagnosed family member and that HAE truly affects the whole family.
This youth produced podcast is brought to...2020-02-2104 min#BeyondHAE Youth Produced Podcast#BeyondHAE: Staying Active Helped Me Push Through Challenges (Luke)Episode 5 is hosted by Luke. In this episode, Luke talks about his fear of needles and how he found the strength to overcome his fear so that he could be proactive in treating his HAE attacks. Luke credits the strength he found to his involvement in sports and his desire to stay active despite his frequent swells. We hope that you too can find strength in Luke's story, knowing that you are not alone.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy o...2020-01-3006 min#BeyondHAE Youth Produced Podcast#BeyondHAE: When There's a Will, There IS a Way (Maddie)Episode 4 is hosted by 16 year old Maddie. In this episode, Maddie talks about what it's like to live with multiple diagnosis' and how she copes with the pain to pursue the things that she loves most.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, www.haea.org.2019-12-1904 min#BeyondHAE Youth Produced Podcast#BeyondHAE: Creating a Strong Support System (Noah)Noah is your host for Episode 3. In this episode of the #BeyondHAE Podcast, Noah talks about the importance of creating a strong support system for you and the management of your HAE. From family and friends to teachers and coaches, different people in your life can play a large role in your HAE support system. Noah talked with his close friend Greg about how friends can offer their support. Greg talks about what it means to him to support Noah. Join Noah as he shares his personal story with you and offers tips for you to better manage your...2019-12-1104 min#BeyondHAE Youth Produced Podcast#BeyondHAE: We're in Washington, DC for HAEA's Capitol Hill DayEpisode 2 was recorded live in Washington, DC during the Hereditary Angioedema Association's Capitol Hill Day. This is a day when over 90 HAE patients and caregivers from across the nation come together in our nation’s capitol and meet with their congressional representatives to advocate for continuous support for HAE patients and their needs. Hear from hosts, Jack, Ava, and Stephen as they talk about what it means to be a young person participating in this event and advocating to their congressional leader. Each host shares a story about their experience and talks about why advocating is so important to our co...2019-11-0203 min#BeyondHAE Youth Produced Podcast#BeyondHAE: What is HAEThis is the first episode of the #BeyondHAE Podcast series! Hear from episode hosts, Noah, Carlie, and Luke as they welcome you to our series with an overview of what Hereditary Angioedema is. Each host shares a deeply personal HAE memory and how that memory has impacted the person they are today. We hope that these stories help other young people with HAE realize that they are not alone.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. T...2019-11-0105 min