Rare Disease News

Christine Grube – 2017 Rare Impact Award Honoree (Awarded Posthumously)

Published March 15, 2017 by NORD

Categorized in -

2017 Honoree Rare Impact Award Christine Grube After being diagnosed with Giant Axonal Neuropathy (GAN), a rare genetic disorder, Christine (Chrissy) Grube volunteered to be the first patient injected with …

Continue reading “Christine Grube – 2017 Rare Impact Award Honoree (Awarded Posthumously)”

Dr. Robert J. Desnick, MD, Ph.D – 2017 Rare Impact Award Honoree

Published March 15, 2017 by NORD

Categorized in -

2017 Honoree Rare Impact Award Robert J. Desnick, M.D., Ph.D. “It’s very satisfying when your research efforts lead to new diagnostics or treatment for patients suffering from rare diseases.” This …

Continue reading “Dr. Robert J. Desnick, MD, Ph.D – 2017 Rare Impact Award Honoree”

NORD Unveils “Do Your Share for Rare,” Year-long Campaign for Rare Disease Public Awareness

Published February 28, 2017 by NORD

Categorized in -

Danbury, Conn., February 28, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announced a year-long awareness campaign for …

Continue reading “NORD Unveils “Do Your Share for Rare,” Year-long Campaign for Rare Disease Public Awareness”

Rare Disease Summer Family Camp: A Place to Call Home

Published February 13, 2017 by NORD

Categorized in -

June 1-4 in Ashford, CT: Second-ever Rare Disease Summer Family Camp

Join NORD and ABC News for a Rare Disease Day® Tweetchat on Feb. 28

Published February 9, 2017 by NORD

Categorized in -

In celebration of Rare Disease Day®, NORD will co-host a tweetchat on the topic of rare diseases with Dr. Richard Besser, Chief of the ABC News Medical/Health Unit. The tweetchat will take place on Tuesday, Feb. 28, …

Continue reading “Join NORD and ABC News for a Rare Disease Day® Tweetchat on Feb. 28”

Raise Your Hand for Rare Disease Research

Published February 3, 2017 by NORD

Categorized in -

Click here to donate to research!

Family Moves Across State Lines to Receive Better Access

Published December 22, 2016 by NORD

Categorized in -

Today we are sharing the story of one little girl who, by the age of three-months old, had faced surgery, an investigational treatment, and a near-fatal infection. When Gabby was born …

Continue reading “Family Moves Across State Lines to Receive Better Access”

A Message from Our President and CEO

Published December 20, 2016 by NORD

Categorized in -

“When you are faced with a difficult health challenge, you need to be able to turn to a trusted source for support and advice – much like many people battling …

Continue reading “A Message from Our President and CEO”

Nominations Open for NORD’s 2017 Rare Impact Awards

Published October 14, 2016 by NORD

Categorized in -

Registration is open for the 2017 Rare Impact Awards.

Rare Diseases & Orphan Products Breakthrough Summit Speakers

Published October 5, 2016 by NORD

Categorized in -

Washington, D.C., October 5, 2016 – NORD, the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today announced the three keynote speakers for its 2016 Rare Diseases …

Continue reading “Rare Diseases & Orphan Products Breakthrough Summit Speakers”

Rare Disease News

Access State Report Card Data