Category: New
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EP3 – David Rose, an Ultra-Rare patient advocate and Business Development at Rare Revolution Magazine
David 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.
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EP20 –
Kimberly Hi, I’m your host, Kimberly Thomas-Tague and you’re listening to Signalise Dazzle4Rare podcast. Whether you’re a patient advocate, caregiver, or clinician, Signalise is your source for good news, personal stories, events, and the things that rare and associated communities care about. Follow Signalise and Dazzle4RAre at D A Z Z L E the number…
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The importance of patient advocacy to clinical research
Audio file Transcript Hi, my name is Kimberly Thomas-Tague and I am the founder of #Dazzle4Rare and host of the Signalise podcast. I’ve got a metaphor for you. You’ve been asked to plan a party for a group of people. Your partner sent out an invitation that says the party will be inclusive,…
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EP4 – Lee Reavey, Co-Founder and CEO of the NCBRS Worldwide Foundation
Lee 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…
