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Archive for October 2019

Finding Our Crack in the Ice

She encouraged each of us to find our crack in the expansive ice of rare disease and drive a wedge into it. The effort of everyone continually working their own little crack (science, policy, direct experience, economics, medicine, fundraising, advocacy, or whatever) will eventually weaken the ice enough to shatter it. Together we can beat these diseases. This got me thinking about the contribution of Salem Oaks.

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Remember Why We Are Doing All This

Meet Kyle Bryant On our next episode of Improbable Developments we welcome Kyle Bryant of the Friedreich’s Ataxia Research Alliance (FARA) to discuss his journey as a patient with Friedreich’s Ataxia (FA), as an active patient leader, and in his job as a liaison between the FA community and researchers. After being diagnosed with FA…

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Anything but Ordinary

Our experience at Global Genes Rare Patient Summit I think what needs to be pointed out in that title, is the word RARE.  This conference is anything but ordinary.  The attendees are amazing and consist of a diverse population of patients, experts, consultants, and advocates who are all teaming together to try to drive change…

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