The Cystinosis Research Network (CRN), a 501(c)(3) charitable organization and NORD member, created the first-ever “Dream, Achieve, Inspire” art exhibit prepared entirely by patients with cystinosis, a rare, genetic-metabolic disease. Paintings, poems, sculptures, …
The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on the announcement that Petra Kaufmann, M.D., M.Sc., has been named director of …
This blog post was written by Lisa Yue, Children’s Cardioymyopathy Foundation’s Founding Executive Director. When one thinks of heart disease, adults usually come to mind. The reality is children …
A few months ago, NORD and our members hosted a “Meet the Patients” event at the annual conference of the American Medical Student Association (AMSA). We were thrilled with the …
Next month, millions of Americans will tune in to watch the Miss America Pageant, airing live on ABC on September 13, 2015, from Atlantic City, New Jersey. We were excited …
“I really appreciate all that NORD does for those living and managing their lives with rare disorders.” -Paula Mann Paula Mann is a mother of a boy, Garrett, born in …