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February 13, 2017

TOPIC: Featured News, Patients & Members, Events, Get Involved

Rare Disease Summer Family Camp: A Place to Call Home

Posted by Lisa Sencen

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: Featured News, Events, Get Involved

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

Posted 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 by Lisa Sencen

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

January 27, 2017

TOPIC: Press Releases, Patients & Members

NORD Publishes Report on Spontaneous Intracranial Hypotension

Posted by Jennifer Huron

New Resource Aims to Provide Information for Patients, Families and the Public

Washington, D.C., January 27, 2017—As part of its ongoing series to promote awareness and education of rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Spontaneous Intracranial Hypotension (SIH). This new resource is available free online to individuals around… Read More

January 11, 2017

TOPIC: Press Releases, Medical, Advocacy

Orphan Drugs Represent 41 Percent of All New Medications

Posted by Jennifer Huron

Washington, D.C., January 11, 2017—Data released by the U.S. Food and Drug Administration (FDA) show that 9 of the 22 new medications approved in 2016, or 41 percent, are orphan drugs to treat rare diseases.

“The percentage of orphan drugs approved in recent years by FDA remains high and this is welcome news for the 30 million Americans with rare diseases,” said Peter L. Saltonstall,… Read More