All Episodes
Displaying 21 - 40 of 41 in total
EP19: Podcasting to Your People with Tips & Advice from Radio Veteran Pete Allen
I’m excited to be joined by Pete Allen, a veteran radio and podcast producer with a wealth of experience in audio production. We’ll discuss common questions I get aske...
EP18: Making More Accessible Content 5 Tips and Bonus Tricks for More Accessible Content
Content accessibility, it 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 conten...
EP17: Traveling the Road to EDIRA with Dr. Sondra Butterworth and Sam Fillingham
Welcome 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 w...
EP16 -Looking back at Rare Disease Days past, Community News, and Awareness Days in March
Finally, 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 ...
Bonus EP2: Chatting about Stiff Person Syndrome with Guest, Lauren McDermott
Fellow ”Lone Wolf” advocate Lauren McDermott joins us to talk about her atypical SPS diagnosis and a bit about SPS. This episode is an unedited conversation, capturing...
EP15: Rare Disease Day Events and Celine Dion’s Ultra-Rare Diagnosis with Guest Lauren McDermott
On 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.
EP14: Rare and Associated Community Love Letters, News, and More
On 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 ...
EP13: Mixed data methods in rare disease and how patient narratives can impact the diagnostic journey with Dr Sondra Butterworth
On today’s episode of Signalise: a Dazzle4Rare podcast, we’re joined by Dr Sondra Butterworth PhD, a community health psychologist and so much more.
EP12 - How algorithms and platform acquisitions are affecting rare disease social media right now
If 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 pla...
EP11: A Very Signalise Holiday Episode with Host Kimberly Thomas-Tague
Welcome 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 ...
EP10: Menkes Dad Daniel DeFabio on grief in the Marvel Universe and ours as well as the art of storytelling
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 h...
EP9 - How rare communities will use emergent ”Metaverse” concept for social media and patient engagement with guest Sean Gordon
Sean Gordon is the Founder and Chief Volunteer Officer of RareFundingTeam. Sean was diagnosed with an adult onset condition, Adult Polygulcosan Body Disease.
EP8 - David Ross, Men’s Mental Health Advocate in Rare Disease
David 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...
EP7 - Programme notes, community news, and NET Cancers awareness
Now 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...
EP6 - How physical features can help point to a rare genetic condition
We’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 t...
EP5 - Sci-Fi and Horror Heroes, spooky jokes, problematic depictions of rare disease and more
This 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)...
EP4 - Lee Reavey, Co-Founder and CEO of the NCBRS Worldwide Foundation
Our guest, Lee Reavey, is the Co-Founder and CEO of the NCBRS Worldwide Foundation. He co-founded NCBRS Parent Support Group in May 2010.
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 E...
EP2 - Sam FIllingham, CEO and Founder at Poland Syndrome Support UK
For our inaugural episode, we’re glad to welcome friend, advocate, and parent, Sam Fillingham. Sam is the Founder of PIP UK. According to their website pip-uk.org, ”ma...
EP1 - Welcome to Signalise: a #Dazzle4Rare podcast
Welcome to Signalise: a Dazzle4Rare podcast. Here, we signal-boost undiagnosed and rare stories, turning up the volume on their life-changing stories.