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December 13, 2018

TOPIC: Featured News, Get Involved

Year-End Message from NORD’s President and CEO

Posted by Christina Jensen

For more than 35 years, NORD has been the voice of the rare disease community. Whether it’s advocating in Washington, protecting the Orphan Drug Act, working with the FDA to integrate the patient’s voice or providing assistance to those in need, NORD is the organization the rare disease community and patients rely on.

And, we rely on you!

Without your continued… Read More

December 3, 2018

TOPIC: Featured News, Patients & Members, Press Releases

National Gathering of the Rare Disease Community and Health Professionals Launched with 2019 Living Rare, Living Stronger | NORD Patient & Family Forum Featuring the Rare Impact Awards

Posted by Laura Mullen

Danbury, CT, December 3, 2018 – The National Organization for Rare Disorders (NORD) has announced a meeting for patients, caregivers and the medical community. The 2019 Living Rare, Living Stronger NORD Patient & Family Forum will take place June 21 – 23 in Houston, Texas. In addition, the 2019 Rare Impact Awards… Read More

November 29, 2018

TOPIC: Medical, Press Releases, Uncategorized

NORD Publishes Report on Post-Transplant Lymphoproliferative Disease

Posted by Laura Mullen

Washington, DC, November 29, 2018–As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Post-Transplant Lymphoproliferative Disease (PTLD) in its Rare Disease Database. This new resource is available free online… Read More

November 19, 2018

TOPIC: Advocacy, Featured News, Get Involved

Orphan Drug Act Resolution Introduced in Congress

Posted by Christina Jensen

Senator Hatch and Representatives Lance and Butterfield introduced a resolution that heralds the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation.

This year marks the 35th anniversary for the ODA. That means 35 years of increased hope and treatments for the rare disease community. Prior to the ODA, there were only 34 therapies… Read More

November 9, 2018

TOPIC: Advocacy, Get Involved, Medical

Featured Student: Jennifer Shoskes

Posted by Christina Jensen

NORD’s Educational Initiatives team spoke with Jennifer Shoskes, a Northeastern University graduate student and NORD Student Chapter Leader. In this interview, Jennifer talks about her inspiration for starting a NORD Student Chapter and where she hopes to see her career go working within the rare disease community.
For more information on NORD’s student programs, click… Read More