Wednesday Mar 15, 2023

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 where triumph, resilience, and hope hang in the air, it is very much real.

In the face of adversity, rare disease communities continue to perservere, despite circumstances in which their voices are not always heard or valued. Communities have been looking for a way, a place, to find Equality and Diversity in rare disease spaces with research and clinical trial participation as well as in drug development, having a place at the proverbial table. While big stakeholders across healthcare centered spaces are starting to understand the importance of patient inclusion, there is still a disparity between what is logically known about including patients versus what they are doing to ensure unique patient perspectives are included.

As Sam so aptly said during the Rare Disease Day live stream, "We are the experts in our own conditions." EDIRA is a step towards including patients as experts in their own conditions, and it is a step towards a brighter, more inclusive future.

Episode resource links:

Spectrum 10k Consultation
Update: Statement on NHLBI decision to resume participant enrollment in the Pilot and Feasibility Study of Hematopoietic Stem Cell Gene Transfer for Sickle Cell Disease
Full "Road to EDIRA" Live Stream Webinar on Rare Disease Day
EDIRA Event Brite tickets
Sponsor: Costello Medical "Giving Back" programme
Sponsor: COUCH Health
Speaker: Dr. Natasha Radcliffe
In-Conversation with Elizabeth Davenport
In-Conversation with Hazel Kim from Chinese Autism UK
Event Ambassador: Glenn Webbe

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