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Signalise: a Dazzle4Rare Podcast

The Dazzle4Rare event and Signalise podcast amplify the voices of rare disease and associated communities by sharing their stories, new, events, and more. Working together, we have strength in numbers, amplifying our critical messages. We feature guests and discuss relevant topics for rare disease patients, caregivers, and those in the URCIID community.

EP39 Rare and Relevant News Stories of 2023 TL;DR and Update

17 mins; January 04, 2024

Bonus: 2024 Podcast Schedule Change

1 min; January 03, 2024

EP37: Four Paediatric Holiday Cheer Stories and UHC Day 12th December

8 mins; December 06, 2023

EP36: Rare and Relevant TL;DR and an Update on ”Take Care of Maya”

26 mins; November 21, 2023

EP35: November TL;DR Feat. a Message for Menkes Awareness

20 mins; November 07, 2023

EP34: 2023 Halloween Special: Reel Struggles On and Off Screen for Rare Heros in Media, Feat. Original Spooky Jokes by Kimberly

25 mins; October 24, 2023

EP33: Kimberly Speedruns an October Rare and Relevant TL;DR Plus Network Good News

11 mins; October 10, 2023

EP32: September Rare and Relevant TL;DR and Returning Guest Daniel De Fabio on Global Genes Rare Week 2023

20 mins; September 26, 2023

EP31: September Awareness Days, NORD Designates New Rare Disease Center, and Listener Voicemails

23 mins; September 12, 2023

EP30: September’s Awareness Dates, Community Clips, and Global TL;DR News feat. Kerry Wong & Lee Reavey

28 mins; August 29, 2023

EP29: 7 Years of #Dazzle4Rare feat. Co-Hosts and Advocates from 2023

33 mins; August 22, 2023

EP28: Dazzle4Rare2023 Past and Present Co-Hosts and Participants

30 mins; August 01, 2023

EP27: Empower and Impact Through July Awareness Months, Days, and More in Your Rare and Relevant TL:DR for mid-July 2023

10 mins; July 18, 2023

EP26: Patient-Centric Opportunities in July for Advocacy, Support, and Awareness + Your TL;DR Wrap-up

17 mins; July 05, 2023

EP25: Minority Mental Health Awareness Month, The Big Listen, Plus More of What’s Rare & Relevant in July 2023

18 mins; June 20, 2023

EP24: Happy Pride 2023 +Your June Rare and Relevant TL;DR

28 mins; June 06, 2023

EP 23 Bonus: Late May Rare and Relevant TL;DR News and Events

20 mins; May 24, 2023

EP22: Signalising Newborn Screening with Screen4Care EFPIA Lead, Dr. Nicolas Garnier

37 mins; May 23, 2023

EP 21: May TL;DR and Dazzle4Rare 2023 Housekeeping

22 mins; May 09, 2023

EP20: Rare and Relevent TL;DR and a Personal Check-In with You

20 mins; April 25, 2023

EP19: Podcasting to Your People with Tips & Advice from Radio Veteran Pete Allen

42 mins; April 11, 2023

EP18: Making More Accessible Content 5 Tips and Bonus Tricks for More Accessible Content

22 mins; March 28, 2023

EP17: Traveling the Road to EDIRA with Dr. Sondra Butterworth and Sam Fillingham

20 mins; March 14, 2023

EP16 -Looking back at Rare Disease Days past, Community News, and Awareness Days in March

20 mins; February 27, 2023

Bonus EP2: Chatting about Stiff Person Syndrome with Guest, Lauren McDermott

30 mins; February 27, 2023

EP15: Rare Disease Day Events and Celine Dion’s Ultra-Rare Diagnosis with Guest Lauren McDermott

21 mins; February 14, 2023

EP14: Rare and Associated Community Love Letters, News, and More

24 mins; January 31, 2023

EP13: Mixed data methods in rare disease and how patient narratives can impact the diagnostic journey with Dr Sondra Butterworth

35 mins; January 17, 2023

EP12 - How algorithms and platform acquisitions are affecting rare disease social media right now

22 mins; January 03, 2023

EP11: A Very Signalise Holiday Episode with Host Kimberly Thomas-Tague

34 mins; December 20, 2022

EP10: Menkes Dad Daniel DeFabio on grief in the Marvel Universe and ours as well as the art of storytelling

34 mins; December 13, 2022

EP9 - How rare communities will use emergent ”Metaverse” concept for social media and patient engagement with guest Sean Gordon

30 mins; November 29, 2022

EP8 - David Ross, Men’s Mental Health Advocate in Rare Disease

33 mins; November 15, 2022

EP7 - Programme notes, community news, and NET Cancers awareness

8 mins; November 08, 2022

EP6 - How physical features can help point to a rare genetic condition

20 mins; November 01, 2022

EP5 - Sci-Fi and Horror Heroes, spooky jokes, problematic depictions of rare disease and more

30 mins; October 25, 2022

EP4 - Lee Reavey, Co-Founder and CEO of the NCBRS Worldwide Foundation

36 mins; October 18, 2022

EP3 - David Rose, an Ultra-Rare patient advocate and Business Development at Rare Revolution Magazine

35 mins; October 11, 2022

EP2 - Sam FIllingham, CEO and Founder at Poland Syndrome Support UK

33 mins; October 04, 2022

EP1 - Welcome to Signalise: a #Dazzle4Rare podcast

17 mins; October 04, 2022

Signalise : a Dazzle4Rare Podcast - The Trailer

8 mins; September 17, 2022

Signalise: a Dazzle4Rare Podcast

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