Shows
Signalise: a Dazzle4Rare PodcastEP39 Rare and Relevant News Stories of 2023 TL;DR and UpdateWelcome to the first 2024 episode of Signalise: a Dazzle4Rare podcast! Remember, we're now airing on Fridays. In this episode, we reflect on 2023's significant rare disease developments and look forward to more progress in 2024.
Most Read Rare Disease News of 2023
- FDA's first gene therapy approval for DMD.
- Promising treatments for idiopathic pulmonary fibrosis and hemolytic disease of the fetus and newborn.
- Risks of colitis in MS patients using ocrelizumab and rituximab.
Sources:
AJMC's Top 5 Rare Disease Articles of 2023
https://www.ajmc...
2024-01-0517 min
Signalise: a Dazzle4Rare PodcastBonus: 2024 Podcast Schedule ChangeA quick "bonus" episode to drop to let you know that we'll be making some scheduling changes and 2024 will hopefully fingers crossed be a year of positive changes. But first, a big thanks to our faithful listeners for tuning in today and to this bi-monthly podcast. From this month, January 2024, we're shifting our podcast schedule to Fridays, keeping the podcast bi-monthly.
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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. Y...
2024-01-0301 minSignalise: a Dazzle4Rare PodcastEP37: Four Paediatric Holiday Cheer Stories and UHC Day 12th DecemberIn this festive episode, Kimberly shares a little holiday spirit by with heart-warming stories of children with rare conditions and their families finding hope. She also shares International Universal Health Coverage Day brought to our community's attention by Dr. Eleonora Passeri of Rare Special Powers (IT).
1. International Universal Health Coverage Day: https://www.un.org/en/observances/universal-health-coverage-day
2. Emma's Dravet Syndrome Story:
https://www.cbsnews.com/philadelphia/news/dravet-syndrome-rare-disease-emma-watson
3. George's Lung Condition: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1403838
4. George's Christmas Celebration:
https://www.coventrytelegraph.net...
2023-12-0608 minSignalise: a Dazzle4Rare PodcastEP36: Rare and Relevant TL;DR and an Update on ”Take Care of Maya”Please note there are audio issues with this episode. I'll be working to upload an improved version later on release date.
In this, Kimberly shares a range of awareness events including International Epilepsy Awareness Day and World Pneumonia Day. A reminder for listeners that events like Bio-IT World Europe event are coming up and can be found on the Events Calendar. Be sure to check out conferences and events ahead of time so you don't miss out on tickets or early-bird discounts.
Also, for those interested in industry and clinical trials s...
2023-11-2126 minSignalise: a Dazzle4Rare PodcastEP35: November TL;DR Feat. a Message for Menkes AwarenessIn this episode, Kimberly shares several important awareness events happening in November, such as International Epilepsy Awareness Month, National CRPS Awareness Month, and Colour the World Orange Day for Complex Regional Pain Syndrome. It also highlights days like World NET Cancer Day, International 15q Day, and Smith-Magenis Syndrome Awareness Day, among others.
The podcast touches on news from Medics4Rare survey aiming to increase healthcare professional awareness of rare diseases. Dr. Lucy McKay's article in The Guardian addressing the need for improved approaches to rare diseases in healthcare education is also mentioned. Also discussed, the ER...
2023-11-0820 min
Signalise: a Dazzle4Rare PodcastEP34: 2023 Halloween Special: Reel Struggles On and Off Screen for Rare Heros in Media, Feat. Original Spooky Jokes by KimberlyHold on to your pointy hats! In this episode, we share many more celebrities with rare or less commonly understood conditions in sci-fi and horror media. The discussion begins with Bruce Willis, who has recently been diagnosed with a rare form of dementia. The conversation extends to other celebrities and their amazing careers in entertainment over the years.
We break up some serious and inspiring stories with some original (bad) jokes by Kimberly based on The Shinning and more.
We cap things off with three fictional rare conditions from days of yore...
2023-10-2525 minSignalise: a Dazzle4Rare PodcastEP33: Kimberly Speedruns an October Rare and Relevant TL;DR Plus Network Good NewsIn the latest episode of Signalise, Kimberly performs a speedrun of your Rare and Relevant TL;DR and happy news stories from our D4R community.
We've also added new awareness events for October, including the National Disability Employment Awareness Month, and share some exciting news from our friends at GOPI3KS.
Resources
- October is National Disability Employment Awareness Month
[More info: DOl.gov]
- Genomics England has added a list of rare conditions for inclusion in their research study.
[www.genomicsengland.co.uk/news/genomics-england-announces-list-of-rare-conditions-to-be-included-in-world-leading-research-study]
...
2023-10-1111 minSignalise: a Dazzle4Rare PodcastEP32: September Rare and Relevant TL;DR and Returning Guest Daniel De Fabio on Global Genes Rare Week 2023In this episode of Signalise, we dive into the world of rare and relevant events. From September's Mitochondrial Disease Awareness Month to October's myriad of awareness campaigns, we've got your calendar covered.
But that's not all!
Stay tuned as we feature a special guest, Daniel De Fabio from The Disorder Channel, who shares insights from Rare Week in San Diego. We had a long chat so only a small portion is featured in this week's episode. Stay tuned and subscribe to Signalise: a Dazzle4Rare podcast to hear more from our cha...
2023-09-2720 minSignalise: a Dazzle4Rare PodcastEP31: September Awareness Days, NORD Designates New Rare Disease Center, and Listener VoicemailsIn this rare and relevant episode Kimberly delves into various awareness days and months in September. We also talk about upcoming webinars and conferences, share industry resources, and highlight the inspiring "Life After Diagnosis Day" follow-up available on The Disorder Channel.
Stay tuned for voicemails from our listeners, news about Weill Cornell Medicine and New York-Presbyterian Weill Cornell Medical Center, and San Diego-based Crinetics Pharmaceuticals' promising results in the development of an oral medication for acromegaly. So much to hear in one episode!
Links ⬇️
http://dazzle4rare.net/awareness_days](h...
2023-09-1323 minSignalise: a Dazzle4Rare PodcastEP30: September’s Awareness Dates, Community Clips, and Global TL;DR News feat. Kerry Wong & Lee ReaveyIn this episode, Kimberly discusses various awareness months and initiatives in the global rare community, beginning with a recap of International Ataxia Awareness Day and a message from Alan Thomas, a rare disease advocate, emphasizing the importance of collaboration and amplifying the rare disease voice.
We highlight awareness months in September, including International Autoinflammatory Awareness Month, Spinal Muscular Atrophy Awareness Month, Craniofacial Acceptance Month, International Hypothalamic Hamartoma Awareness Month, Leukodystrophy Awareness Month, National Immune Thrombocytopenic Purpura (ITP) Awareness Month, Newborn Screening Month, Pulmonary Fibrosis Awareness Month, STXBP1 Awareness Month, and Thyroid Cancer Awareness Month. The pod...
2023-08-3028 minSignalise: a Dazzle4Rare PodcastEP29: 7 Years of #Dazzle4Rare feat. Co-Hosts and Advocates from 2023In this episode, Kimberly takes a closer look at the journey we’ve taken together over the last seven years with #Dazzle4Rare. From grassroots, this annual event has been a spark of hope uniting us across multiple continents over the years.
It sure has been a journey in all senses of the word. From hearing people greet each other in various languages in the past to seeing people participate from various countries around the world. It’s been really enlightening.
So let’s chat about some insights I’ve collected, scattered as they may be, over...
2023-08-2333 minSignalise: a Dazzle4Rare PodcastEP28: Dazzle4Rare2023 Past and Present Co-Hosts and ParticipantsJoin us in this special and reflective episode of Dazzle4Rare, where we take a journey through time with some remarkable individuals who have been at the heart of our mission. In anticipation of Dazzle4Rare 2023 this August, we've gathered past and present co-hosts who have been instrumental in making a difference: Sam Fillingham from PIP UK, Lee Reavey from NCBRS, David Ross from the Men's Mental Health Group, and Sean Gordon from Rare Funding Team and RAREVerse.
In this episode, we delve into the archives and bring you insightful snippets from Kimberly's conversations with each of...
2023-08-0230 minSignalise: a Dazzle4Rare PodcastEP27: Empower and Impact Through July Awareness Months, Days, and More in Your Rare and Relevant TL:DR for mid-July 2023Welcome to Signalise: a Dazzle4Rare podcast guest-hosted by Sam Fillingham, CEO of PIP-UK the Poland Syndrome Charity and Torie Robinson of the Epilepsy Sparks podcast.
In this episode, we Sam and Torie share events and news relevant to July 2023. We start with Fragile X Syndrome Awareness Month, Sarcoma Awareness Month, Glioblastoma Awareness Day, World Castleman Disease Day, World Sjogren's Day, CTNNB1 Awareness, Legg-Calve-Perthes Awareness Day, and Jansen's Disease Awareness Day.
This month also marks Acute Necrotizing Encephalopathy (A.N.E) Awareness Day, a condition affecting young children, and the efforts of AN...
2023-07-1910 minSignalise: a Dazzle4Rare PodcastEP26: Patient-Centric Opportunities in July for Advocacy, Support, and Awareness + Your TL;DR Wrap-up
In this episode, we dive into a range of events, discussing various awareness days taking place in July, and highlighting opportunities that focus on patient-centered initiatives for rare diseases.
We also discuss various awareness days in July, including Chronic Disease Day, Glioblastoma Awareness Day, World Castleman Disease Day, World Sjögren's Day, #CTNNB1 Awareness, Legg-Calve-Perthes Awareness Day, Jansen’s Disease Awareness Day, and Acute Necrotizing Encephalopathy (ANE) Awareness Day. We highlight the finalists for the Social Health Awards and provide updates on the Xcelerate RARE challenge, Well-CAST Caregiver Support program, and Patient Office Hours.
2023-07-0517 minSignalise: a Dazzle4Rare PodcastEP25: Minority Mental Health Awareness Month, The Big Listen, Plus More of What’s Rare & Relevant in July 2023Welcome to this week’s episode of Signalise: a Dazzle4Rare podcast. Bringing you the TL;DR on the the latest in the world of rare and associated conditions. This week, we'll be discussing what's happening in the realm of awareness, highlighting both rare and non-rare awareness events, spotlighting upcoming conferences in July, and a quick-fire roundup of global news in the rare and associated communities around the world. Let’s not forget your Dazzle4Rare 2023 info!
Strap in with your favourite beverage or snack and let’s do the darn thing!
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Links...
2023-06-2118 minSignalise: a Dazzle4Rare PodcastEP24: Happy Pride 2023 +Your June Rare and Relevant TL;DR
Happy Pride Month!
Hey, welcome to another episode of Signalise and happy Pride Month 2023! In today's episode, we'll be giving you the rare and relevant TL;DR and LGBTQ+ Price as it intersects with the URCIID or undiagnosed, rare, chronically and invisibly ill, and Disability communities. We acknowledge that people hold a range of beliefs and ideologies, including those shaped by religion or political affiliations. Our intention is to create a safe and inclusive space for open dialogue and understanding, regardless of these affiliations, understanding everyone has unique and diverse beliefs. We invite everyone to join us on this journey o...
2023-06-0728 minSignalise: a Dazzle4Rare PodcastEP 23 Bonus: Late May Rare and Relevant TL;DR News and EventsWelcome to this bonus episode of Rare and Relevant TL;DR!
Our regular episode this week, the week of the 24th of May 2023 features a chat with Dr. Nicola Garnier of Screen4Care. Go check that episode out to hear our discussion about new-born screening.
Now, whether this is your first or fifth episode, thanks for being here! It means a lot to me and the folks whose news, events, and guest appearances are featured in this podcast. If you’d like to share something with us or share a voice message, check the show note...
2023-05-2420 minSignalise: a Dazzle4Rare PodcastEP22: Signalising Newborn Screening with Screen4Care EFPIA Lead, Dr. Nicolas GarnierWelcome to this episode of Signalise: a Dazzle4Rare podcast. In this episode, we’re joined by Dr. Nicolas Garnier (French pronunciation: [ni.ko.la]) who’ll tell us a bit about himself and his work.
We’d planned to discuss Dr. Garnier’s work in new-born screening and the topic broadly but I couldn’t help myself; I wanted to get a more full understanding on his current project, Screen4Care where he is the consortium lead.
I think of Dazzle4Rare as a community service to our rare and associated communities so I’m glad that...
2023-05-2437 minSignalise: a Dazzle4Rare PodcastEP 21: May TL;DR and Dazzle4Rare 2023 HousekeepingWe're kicking off with a bang! May is jam-packed with event, awareness days, and news! Without further ado, let’s do the darn thing and get to Rare and Relevant, Your TL;DR!
First up, it's Huntington's Disease Awareness Month, Acute Disseminated Encephalomyelitis (ADEM) Awareness Month, ALS Awareness Month, Cystic Fibrosis Awareness Month, Ehlers-Danlos Syndrome and Hypermobility Syndrome Awareness Month, Ichthyosis Awareness Month, Myositis Awareness Month, Prader-Willi Syndrome Awareness Month, Progressive Supranuclear Palsy (PSP) Awareness Month, and PTEN Hamartoma Tumor Syndrome Awareness Month, all happening from May 1st to 30th.
Speaking of PTEN awareness month, ba...
2023-05-1022 minSignalise: a Dazzle4Rare PodcastEP20: Rare and Relevent TL;DR and a Personal Check-In with YouWelcome to Signalise: a Dazzle4Rare podcast. If this is your first or your fifth episode of Signalise, thanks for taking the time. You could be doing anything right now but you’re here and we appreciate that!
Every month is jam-packed with awareness days, events, and webinars. Wading through all the emails, alerts, and invitations from various organizations like Global Genes, Beacon, Genetic Alliance, and others can be a struggle. And let's not forget YOUR community - your wins, your good news!
We're introducing Rare and Relevant, your TL;DR for all things rare, as...
2023-04-2620 minSignalise: a Dazzle4Rare PodcastEP19: Podcasting to Your People with Tips & Advice from Radio Veteran Pete AllenWelcome to episode 19 of #Signalise: a #Dazzle4Rare podcast! Today, I'm excited to be joined by Pete Allen, a veteran radio and podcast producer with a wealth of experience in the industry. We'll be addressing some of the most common questions I get asked, like what a podcast is, what work goes into producing one, and whether it's possible to start a podcast with minimal resources or funds.
Pete has generously shared his insights on these topics and more, and you won't want to miss his expert advice. In fact, he even has a website w...
2023-04-1242 minSignalise: a Dazzle4Rare PodcastEP18: Making More Accessible Content 5 Tips and Bonus Tricks for More Accessible ContentIn today’s episode of Signalise: a Dazzle4rare Podcast, I’m taking us down a familiar path that is well-known but perhaps less traveled – creating accessible content online.
If it's not the top of your mind, it's not on the top of your list. This episode breaks down the guilt and shame we may feel when created content online that isn't always accessible, even with the bare minimums covered. No shade. No shame. Just an open, honest conversation starter about creating website content and other digital or print content that helps more people access your community, as wel...
2023-03-2922 minSignalise: a Dazzle4Rare PodcastEP17: Traveling the Road to EDIRA with Dr. Sondra Butterworth and Sam FillinghamWelcome to this episode of Signalise: a Dazzle4Rare podcast. Today, we’re traveling the road to EDIRA. While EDIRA may sound like a fantasy realm, a golden landscape where triumph, resilience, and hope hang in the air, it is very much real. In the face of adversity, rare disease communities continue to perservere, despite circumstances in which their voices are not always heard or valued. Communities have been looking for a way, a place, to find Equality and Diversity in rare disease spaces with research and clinical trial participation as well as in drug develo...
2023-03-1520 min
Signalise: a Dazzle4Rare PodcastEP16 -Looking back at Rare Disease Days past, Community News, and Awareness Days in MarchFinally, the day many of us have been waiting for … the 28th of February. Rare Disease Day.
We all think we know all about Rare Disease Day but let’s take a trip in the Way Back Machine and look at this days modest beginnings.
NCBRS
https://www.facebook.com/ncbrsworldwidefoundation/posts/pfbid02cpbnwheAXvtAw2mjV4ffhVg6Au7ML56emwDAiSQVgSDpUV7CXsGWgPByXE6r8brMl#
Willis Family Statement
https://www.theaftd.org/mnlstatement23/
"End of Amazon Smile [...]" Global Genes Letter
https://globalgenes.org/blog/end-of-am...
2023-02-2820 min
Signalise: a Dazzle4Rare PodcastBonus EP2: Chatting about Stiff Person Syndrome with Guest, Lauren McDermottAs promised in EP15 we present this full unedited audio of Kimberly's informal chat with Lauren McDermott, Stiff Person Syndrome "Lone Wolf" advocate.
Preserved in this chat are moments of brain fog which we both felt was important to share with others. The chat also captures the bouncing around that can often happen with chronic illness and brain fog, revealing what chats like this can sound like without the fancy editing.
Fellow "Lone Wolf" advocate Lauren McDermott joins us to talk about her atypical SPS diagnosis and a bit about SPS.
2023-02-2830 min
Signalise: a Dazzle4Rare PodcastEP15: Rare Disease Day Events and Celine Dion’s Ultra-Rare Diagnosis with Guest Lauren McDermottOn this episode of Signalise: a Dazzle4Rare podcast, we’re helping you get ready for Rare Disease Day 2023 with events, news, and guest Lauren McDermott.
According to RareDiseaseDay.org, you can contribute to this global action and awareness day are, “By Sharing your colours via social media, events, illuminating buildings, monuments and homes, by sharing experiences online and with friends, by calling on policy makers and shining the light on people living with a rare disease, collectively we aim to change and improve lives of the 300 million people worldwide.”
We recommend reaching out to...
2023-02-1521 minSignalise: a Dazzle4Rare PodcastEP14: Rare and Associated Community Love Letters, News, and MoreOn this Valentine’s episode of Signalise: a #Dazzle4Rare podcast, we’ve got news for Amazon Smile charities, we’ve got a lot of awareness days in the diary, and we’ve got your love letters.
If you don't have pen and paper handy, not to worry! All the dates mentioned are in the #Dazzle4Rare International Awareness Days calendar.
Links Mentioned:
Genetic and Rare Diseases (GARD) - Marfan Syndrome
SCN8A Syndrome
Epilepsy Sparks Insights Podcast with Torie Robinson
Rare Disease Day 28th February
You can read the...
2023-02-0124 minSignalise: a Dazzle4Rare PodcastEP13: Mixed data methods in rare disease and how patient narratives can impact the diagnostic journey with Dr Sondra ButterworthOn today’s episode of Signalise: a Dazzle4Rare podcast, we’re joined by Dr Sondra Butterworth PhD, a community health psychologist and so much more. Since discovering she was a carrier of a rare gene, she began to examine the patient journey and how patient narratives can impact the diagnostic journey. Through her work with RareQol they released Whose Voice is it Anyway, a rare community networking campaign. She has collaborated with Medics4RareDisease and participated in many rare disease consultations and other collaborative projects.
You can find Dr Butterworth on LinkedIn and through the RareQol websi...
2023-01-1835 minSignalise: a Dazzle4Rare PodcastEP12 - How algorithms and platform acquisitions are affecting rare disease social media right nowIf there is something you are curious about, passionate about, or angry about, there’s a platform for that. Platforms engulfed in negativity aren't great but these platforms have also given a louder voice to rare and associated communities that exist online.
In this episode, Kimberly discusses how rare disease communities have thrived on social media platforms. She contrasts the past and present of today's rapidly changing social media environment. How will these changes to algorithms and platform acquisitions affect #URCIID communities?
Listen to this week's episode to find out more.
...
2023-01-0422 min
Signalise: a Dazzle4Rare PodcastEP11: A Very Signalise Holiday Episode with Host Kimberly Thomas-TagueWelcome to this final full-length episode of Signalise: a #Dazzle4Rare podcast, in 2022. In this episode, Kimberly recalls the start of #Dazzle4Rare and the wonderful folks who helped make that first year happen. She also shares festive holiday tips for enjoying this season in the ways that are most accessible to you, talks about Tiny Tim's medical condition, drops a few silly festive jokes, and more.
From all of us at the Signalise family, we thank you for your support in helping us support rare disease patients and organisations by sharing their news, events, and personal s...
2022-12-2134 minSignalise: a Dazzle4Rare PodcastEP10: Menkes Dad Daniel DeFabio on grief in the Marvel Universe and ours as well as the art of storytellingContent Warning:
Some parts of this discussion may be distressing or trigger difficult thoughts and feelings for some listeners. If you are experiencing grief, sadness, or struggling to cope, help is available. Please reach out to a medical or mental health provider or speak to someone by phone by dialling at 116 123 for the Samaritans UK or dialling 988 in the US mental health support.
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Daniel DeFabio is a Menkes disease Dad, rare disease advocate, and Producer for DISORDER: The Rare Disease Film Festival, among so many other projects! He has a long history...
2022-12-1434 minSignalise: a Dazzle4Rare PodcastEP9 - How rare communities will use emergent ”Metaverse” concept for social media and patient engagement with guest Sean GordonSean Gordon is the Founder and Chief Volunteer Officer of RareFundingTeam. Sean was diagnosed with an adult onset condition, Adult Polygulcosan Body Disease.
After this life-changing rare disease diagnosis, Sean founded Rare Funding Team with the goal of bringing together communications professionals and rare disease organizations on a pro-bono basis.
Sean has been developing a concept around a "Metaverse" or "Web3" and how it could benefit Rare Disease patient communities.
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RRM Article
https://rarerevolutionmagazine.com/merging-the-metaverse-and-the-rare-disease-community-join-the-conversation/
Contact Sean: https://www.rarefundingteam.com/contact
...
2022-11-3030 minSignalise: a Dazzle4Rare PodcastEP8 - David Ross, Men’s Mental Health Advocate in Rare DiseaseDavid Ross is a patient advocate for Rare Disease Mental Health, a virtual chat support group for men with rare conditions to talk about their mental health. This is a safe space for men to talk about their ups and downs and support one another.
David's social media:
LinkedIn - https://www.linkedin.com/in/david-ross-844965171/
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Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter...
2022-11-1633 min
Signalise: a Dazzle4Rare PodcastEP7 - Programme notes, community news, and NET Cancers awarenessNow that we are in our second month of Signalise: a Dazzle4Rare podcast and a few episodes under our belt, we will be moving to a bi-monthly schedule. This means today’s episode is short, and our next episode will be a full-length one starting .
Join the rare disease men's mental health virtual meetings with it David Ross. For details connect with him on LinkedIn or Twitter at MaleZebra2020.
Learn about World NET Cancers this month by visiting this website.
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https://www.neuroendocrinecancer.org.uk/.
If you're interested in where...
2022-11-0908 minSignalise: a Dazzle4Rare PodcastEP6 - How physical features can help point to a rare genetic conditionWe're entering the month of November with seven rare disease awareness days. In this episode, we're also calling back to our conversation with Lee Reavey of NCBRS on the topic of morphology, or in a medical context, the study of features in genetic conditions. In the context of our discussion, morphology or the physical examination of features led the two visiting consultants at Great Ormond Street Hospital to make an NCBRS diagnosis. This type of examination has helped medical professionals identify genetic conditions for decades, if not centuries.
Disclaimer:
I am not a medical professional. No...
2022-11-0220 minSignalise: a Dazzle4Rare PodcastEP5 - Sci-Fi and Horror Heroes, spooky jokes, problematic depictions of rare disease and moreThis episode is rated G for all the ghouls and goblins!
Finally! If you’re like me, you love Spooky Season! Whether its the pumpkin spice lattes (and everything else), the fun decorations, (or as I say in our home “year-round décor”), or the chance to dress up; it’s a great time to express your creativity.
In this episode of Signalise: a #Dazzle4Rare podcast, we’re going to cover a few subjects: actors with rare conditions in the sci-fi and horror genres, problematic films depicting rare conditions, some tips for your trick-or-treat journey, and...
2022-10-2630 minSignalise: a Dazzle4Rare PodcastEP4 - Lee Reavey, Co-Founder and CEO of the NCBRS Worldwide FoundationLee Reavey is the Co-Founder and CEO of the NCBRS Worldwide Foundation. He co-founded NCBRS Parent Support Group in May 2010. Lee’s son received a diagnosis Nicolaides-Baraitser Syndrome as only the seventh known case of NCBRS in the world. At that time, there was very little, if any, information available online.
NCBRS is related to a gene variant of SMARCA2 but more research is needed.
⬇️⬇️
NCBRS website - https://bit.ly/3S5S8uY
NCBR patient registry - https://bit.ly/3D7FJ5g
Facebook - https://www.facebook...
2022-10-1936 minSignalise: a Dazzle4Rare PodcastEP3 - David Rose, an Ultra-Rare patient advocate and Business Development at Rare Revolution MagazineDavid shares a little about his conditions, Occipital Horn syndrome and Postural Orthostatic Tachycardia Syndrome (PoTS). He shares the early historical link between Ehlers-Danlos syndromes and Occipital Horn in the link to connective tissue and iron storage disorders. We also dive into condition overlap, rare and not-so-rare conditions, and more.
Also, can rare and comorbid conditions work together to help increase awareness?
Listen to hear more about how social media helps make these critical connections.
To find out more about the Rare Youth Revolution internships, contact Rare Revolution and direct your inquiry to Chelsea...
2022-10-1235 minSignalise: a Dazzle4Rare PodcastEP2 - Sam FIllingham, CEO and Founder at Poland Syndrome Support UKWelcome to Signalise: a Dazzle4Rare podcast. Here, we signal-boost undiagnosed and rare stories, turning up the volume on their life-changing stories.
For our inaugural guest episode, we're glad to welcome friend, advocate, and parent, Sam Fillingham. Sam is the Founder of Poland Syndrome Support UK. According to their website pip-uk.org, "many children are born in the UK and across the world with a rare syndrome called Poland Syndrome. Very little is known about Poland Syndrome and it’s hard to find the right people in the know in the medical community."
Sam sha...
2022-10-0533 minSignalise: a Dazzle4Rare PodcastEP1 - Welcome to Signalise: a #Dazzle4Rare podcastWelcome to Signalise: a Dazzle4Rare podcast. Here, we signal-boost undiagnosed and rare stories, turning up the volume on their life-changing stories.
This episode introduces your host, Kimberly, and her mission to signal-boost undiagnosed and rare stories.
Kimberly touches on her own experience with Ehlers-Danlos syndrome in this episode, find out more about the Ehlers-Danlos syndromes here: https://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/
Don't miss an episode of Signalise! Be sure to FOLLOW or SUBSCRIBE via your podcast app of choice. You can also follow Signalise news on @Dazzle4Rare o...
2022-10-0517 minSignalise: a Dazzle4Rare PodcastSignalise : a Dazzle4Rare Podcast - The TrailerWelcome to Signalise: a podcast from Dazzle4Rare.
Here, we signal-boost undiagnosed and rare stories, turning up the volume on their life-changing stories.
In this brief trailer, Kimberly talks about what you can expect from Signalise. You'll also hear why Signalise, and Dazzle4Rare, have been life-changing for Kimberly and many others Worldwide.
To learn more about the Ehlers-Danlos syndrome (EDS), one of which Kimberly survives and thrives with, visit the National Organisation for Rare Disease (NORD) for info on the 13 distinct types of EDS.
Don't miss an epis...
2022-09-1708 min