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May 7, 2018

TOPIC: Advocacy, Featured News

NORD 35th Anniversary Blog Series: The Early Years (1980s)

Posted at May 5, 2018 10:47 am by Jennifer Huron

2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary.  For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate.  Our policy, research and other efforts have played a significant role over the years, advocating for what matters most and making sure patients have a… Read More

May 4, 2018

TOPIC: Advocacy, Featured News, Patient Stories, Patients & Members

35 Ways and Growing: NORD’s Service to the Rare Disease Community

Posted at May 5, 2018 11:10 am by Laura Mullen

For 35 years, NORD has been leading the fight to improve the lives of patients and families with rare diseases. We do this by supporting patients and organizations, accelerating research, providing education, disseminating information, raising public awareness, and driving public policy. The following are 35 examples of how NORD provides service to all of the rare disease community, including… Read More

April 25, 2018

TOPIC: Advocacy, Featured News, Get Involved, Patient Stories, Patients & Members

Estelle Benson, Founder of GBS|CIDP Foundation International: Abbey S. Meyers Leadership Award Honoree

Posted at April 4, 2018 01:15 pm by Christina Jensen

The GBS|CIDP Foundation International, one of the first member organizations of NORD, works towards a future when no one with Guillain-Barre syndrome… Read More

April 25, 2018

TOPIC: Advocacy, Featured News, Get Involved, Patient Stories, Patients & Members

Patrick Dunegan: 2018 Rare Impact Award Honoree

Posted at April 4, 2018 01:00 pm by Christina Jensen

Patrick Dunegan and his wife, Jennifer, met at church, spending time together serving their local community as Kentucky Colonels and through volunteer work with the Jewish Hospital of Louisville. Each Friday, Patrick and Jennifer volunteer at… Read More

April 25, 2018

TOPIC: Advocacy, Featured News, Get Involved, Patient Stories, Patients & Members

Elisabeth Dykens, Ph.D.: 2018 Rare Impact Award Honoree

Posted at April 4, 2018 12:52 pm by Christina Jensen

Elisabeth Dykens, Ph.D., a clinical psychologist and researcher studying rare genetic syndromes, has long been a leader in the field of intellectual and developmental disabilities. Since she began her research in the late 1980s, she has… Read More