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Signalise: a #Dazzle4Rare podcast

Here, we signal-boost undiagnosed and rare stories, turning up the volume on life-changing stories.

Please note, we are currently working on transcribe all episodes (over 20) as well as adding Closed Captions (CC) to the YouTube podcast as well.

  • 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.

  • 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…

  • 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.

  • 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,…

  • 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…

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