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A RARE conversation: RARECast podcast interview with Amy Miller

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Just before the holidays, our own Amy Miller was a guest on the RARECast podcast, a podcast by Global Genes that’s hosted by Daniel Levine. RARECast explores “the intersection of rare disease with business, science, and policy”.

In this episode, Daniel talks with Amy about the THRIVE Initiative, collaboration, and the importance of CNF’s desire to work with other non-profits in the rare disease space, rather than pushing to compete.

The THRIVE Initiative came about when members from different advocacy groups sat down for drinks to talk about their shared pain points, and problems that they wanted to tackle that face the entire community. The organizations that are part of THRIVE are working to be stronger together, and lean on each others’ strengths.

During the interview Amy delves into some of the details of how THRIVE was started, and how the organizations involved have worked together to help put patients and families first.

“Specific to the rare disease community, while you may be engaged in a community because you have a rare disease, the needs of your community are shared by the larger community. So by collaborating, you don’t have to face the same capacity issues, or resource limitations that you may feel alone…”

But the purpose of THRIVE isn’t just to promote collaboration between organizations, it’s a commitment by all members of the rare disease community to work together.

“There’s such a feeling of isolation within our community – specific to rare disease –  because oftentimes your own clinician doesn’t know how to pronounce or even spell the disease that you or your loved one is living with. So by collaborating, by partnering with people who have walked a similar path, that can attack that feeling of isolation… collaboration benefits not only the organization but also the individual…”

Listen to the full Learning to Thrive RARECast episode here.