Tag: podcast
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EP2 – Sam FIllingham, CEO and Founder at Poland Syndrome Support UK
Sam shares a bit about Poland syndrome, how they got started, and their new patient registry, changing the lives of patients far and wide. Join the register ➡️ https://pip-uk.org/poland-syndrome-community-register Learn about the clinic ➡️ https://pip-uk.org/poland-syndrome-clinic Case study ➡️ https://bit.ly/3EmA3Wb
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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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Preparing for Dazzle4Rare 2023
It’s almost time for Dazzle4Rare (D4R) again in August! Hoping you and your team are doing great! A refresher, D4R is an event where non-profit organizations and condition advocates share each other’s messages on social media. The goal is to reach more people than ever across work, family, and friend networks.
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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,…
