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June 20, 2017

TOPIC: Advocacy, Events, Featured News, Get Involved, Sticky Posts for Advocate

NORD Leads Rare Disease Community Days of Action Campaign to Protect Healthcare Coverage

Posted at June 6, 2017 12:09 pm by Christina Jensen

Washington, D.C., June 20, 2017 – The National Organization for Rare Disorders (NORD), an independent nonprofit organization representing the 30 million Americans with rare diseases, has launched a nationwide campaign to urge the U.S. Senate to protect lifesaving health care for the millions of children and adults with rare diseases by opposing any legislation that would harm rare disease patients,… Read More

March 15, 2017

TOPIC: Events, Press Releases

NORD Announces Honorees for the 2017 Rare Impact Awards

Posted at March 3, 2017 09:05 am by Jennifer Huron
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ria_jointheconversation_dateWashington, D.C., March 15, 2017—The National Organization for Rare Disorders (NORD) today announced the people, organizations, and innovators who will be honored at the 2017 Rare Impact Awards on May 18 in Washington, D.C.

The Rare Impact Awards is a charity event that celebrates those who are boldly leading… Read More

March 2, 2017

TOPIC: Events, Press Releases

Musical Act Announced for Rare Impact Awards on May 18th

Posted at March 3, 2017 10:47 am by Jennifer Huron
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Washington, D.C., March 2, 2017—On Thursday, May 18, nationally touring musical artist Gaelynn Lea will perform at the Rare Impact Awards ceremony in Washington, D.C.  In 2016, Gaelynn Lea was named the winner of NPR Music’s second-ever Tiny Desk Contest. Her music video entry rose to the top of over 6,100 entries from around the nation, chosen as the… Read More

February 13, 2017

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

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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