Each year NORD provides a list of suggested activities for Rare Disease Day. This year, one of those major projects is a nationwide campaign to help leaders of rare disease patient organizations — and those who support them — educate their state officials for Rare Disease Day 2013 (Feb. 28, 2013). read more >
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 >
From Left to Right: Mary Dunkle- NORD, Christy Greeley- Cystinosis Research Network, Ron Bartek-Friedrich’s Ataxia Research Alliance, Jeff Wuchich- Alternating Hemiplegia of Childhood Foundation, Mirta Avila Santos, American Behcet’s Disease Association (ABDA), Sandy McElgunn- ABDA, Megan O’Boyle- Phelan-McDermid Syndrome Foundation
Within the first hour of the Annual DIA-NORD U.S. Conference on Rare Diseases & Orphan Products, NORD and DIA hosted a panel of six patient advocates to help remind everyone that patients are at the heart of everything we will be talking about in the next few days.