The Power in Connecting Rare Disease Patient Groups - Dr. Rick Thompson, CEO of Beacon for Rare Diseases

We've heard many stories on Raise the Line about patients and their family members who, upon getting a rare disease diagnosis, build a non-profit organization from scratch to boost advocacy and research for the condition in question. This is obviously a pretty big hill to climb for people with no background in such things. Well, today we're going to learn about Beacon for Rare Diseases, a UK non-profit designed to provide the expertise and support needed to get a rare disease patient group off the ground, and to connect these groups with each other for the purpose of mutual education and support. “What we've seen is that people forming and building patient organizations can help really trigger a new community around that, and help drive the field forward,” Beacon CEO Dr. Rick Thompson tells host Shiv Gaglani. “What we want to do as an organization is help those patient groups form, to grow, and to professionalize their work.” Tune in to find out how Dr. Thompson’s background in evolutionary biology, research and education impacts his work at Beacon, why rare diseases should be approached in the same way as cancer, and his interest in repurposing existing drugs for use in treating rare diseases. 

Mentioned in this episode:  https://www.rarebeacon.org/

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