Feb. 26, 2013
TOPIC: Patients & Members
Posted at February 26, 2013 9:27 pm
This year’s theme for Rare Disease Day is “Rare Disorders Without Borders.” It shows that rare diseases are a global issue, and if we work together in solidarity, we can create a better world for patients. Recently, we asked individuals on the Rare Disease Day US Facebook page what “Rare Disorders Without Borders” meant to them and we were really touched by some of the answers. read more >
Nov. 21, 2012
TOPIC: Patients & Members
Posted at November 21, 2012 7:14 pm
When I arrived through the gates at the Barretstown camp, I was eager to meet my campers and fellow group of volunteers, caras, Gaelic for friend. What I didn’t know is what a lasting impact this camp, set in Ballymore Eustace, Ireland, would have on my life. read more >
Oct. 22, 2012
TOPIC: Featured News, Patients & Members
Posted at October 22, 2012 11:15 am
Patient representatives who missed the recent NIH webinar regarding the planned expansion of the NIH Undiagnosed Diseases Program may still submit input on the questions discussed.
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