Feb. 28, 2013
Posted at February 28, 2013 11:39 am
Today is the day when people around the world will be posting stories, photos and videos about what it means to live with a rare disease. From Kalamazoo to Kiev, the last day of February is observed as Rare Disease Day. read more >
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. 27, 2012
TOPIC: Patients & Members
Posted at November 27, 2012 3:49 pm
NORD staff members Marsha Lanes, MS, Certified Genetic Counselor, Mary Dunkle, Stefanie Putkowski, RN, and Tai Spargo with Yukiko Nishimura at the NORD offices in Connecticut
A representative of the Japanese Patient Association and PRIP Tokyo, a rare disease research foundation, visited the NORD offices in Danbury, Connecticut, Nov. 26 to talk about global collaboration among rare disease patients and advocates. This was the second time in recent months that Yukiko, a long-time associate of NORD, has visited the Connecticut offices to discuss possible areas of collaboration. read more >
Oct. 31, 2012
Posted at October 31, 2012 1:33 pm
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