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May. 12, 2021

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Jeff Goldstein and NORD’s RareLaunch Research Ready

Posted by Valaree DonFrancesco

On the show today: Jeff Goldstein, President, and Founder of the Lung Transplant Foundation, a nonprofit organization that provides education and emotional support for transplant recipients and their caregivers and raises money for lung transplant research. Jeff was diagnosed in his mid-40s in peak health with Idiopathic Pulmonary Fibrosis — lots of syllables with a very bleak outlook. Eighteen years later, he’s still here to talk about not just his incredible story but the extraordinary partnership he’s struck with NORD’s RareLaunch Research Ready program to kick off their first patient registry for this truly under-voiced community.

We dedicate this episode of NORDpod in memory of Jeff and thank him for sharing his gift and his vision with us. 

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