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May 9, 2017

TOPIC: Events, Featured News, Medical, Sticky Posts for Clinicians and Researchers

NORD Launches Free CME Program to Educate Medical Professionals about Rare Diseases

Posted at May 5, 2017 09:56 am by Christina Jensen

Washington, D.C., May 9, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announces the launch of a free continuing medical education (CME) program to educate medical professionals about rare diseases.  The first event will take place on June 17 in Washington, D.C. For more information, or to… Read More

April 27, 2017

TOPIC: Events, Featured News, Medical, Research

Dr. Robert Desnick: 2017 Rare Impact Award Honoree

Posted at April 4, 2017 12:12 pm by Christina Jensen

desnick“It’s very satisfying when your research efforts lead to new diagnostics or treatment for patients suffering from rare diseases.” This is the experience of Dr. Robert J. Desnick, whose pioneering work as a researcher and clinician has improved patient care and prevented thousands of cases of rare, genetic diseases.

Dr. Desnick has… Read More

March 15, 2017

TOPIC: Events, Press Releases, Sticky Posts for Homepage

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