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February 28, 2017

TOPIC: Featured News, Get Involved, Patient Stories, Press Releases

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

Posted at February 2, 2017 09:25 am by Jennifer Huron

DoYourShare cover photoDanbury, 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 rare disease.

Kicking off today—Rare Disease Day 2017—“Do Your Share for Rare” features the voices and stories… Read More

February 13, 2017

TOPIC: Events, Featured News, Get Involved, Patients & Members, Sticky Posts for Homepage, Sticky Posts for Patients and Families

Rare Disease Summer Family Camp: A Place to Call Home

Posted at February 2, 2017 04:44 pm by Christina Jensen
nord-hwgc-rare-disease-summer-family-camp

NORD is pleased to be working with The Hole in the Wall Gang Camp again this year to host the second-ever rare disease summer family camp, June 1-4 in Ashford, Connecticut. For the second year, they will be hosting a special Summer Family Camp for children and families impacted by rare diseases to join together for a weekend of… Read More

February 9, 2017

TOPIC: Events, Featured News, Get Involved

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

Posted at February 2, 2017 04:02 pm by Jennifer Huron

NRD-1057 ABC_RDD_Tweetchat_v2

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, 2017 at 1:00 p.m. EST.

This is the fourth annual tweetchat that ABC News and… Read More

February 3, 2017

TOPIC: Featured News, Get Involved

Raise Your Hand for Rare Disease Research

Posted at February 2, 2017 10:46 am by Christina Jensen
lundbeck-rddus-nord-homepage

By raising your hand, you can show your support for the 30 million Americans with rare diseases.

Simply click here and Lundbeck will donate $1 to rare disease research (up to $10,000 for the campaign).  The donations will be added to a general research fund managed by NORD.  The campaign will run through the month of February in honor of Rare Disease Day on Feb. 28th.

This is the 8th annual… Read More