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February 16, 2015

TOPIC: Uncategorized

Advancing Research: NORD Partners with Lundbeck for 6th Raise Your Hand Campaign

Posted by Christina Jensen

For the sixth year, we’re proudly partnering with the pharmaceutical company Lundbeck on the “Raise Your Hand to Fight Rare Diseases” campaign, which supports rare disease research in celebration of Rare Disease Day.

The campaign invites individuals to visit the Rare Disease Day U.S. website, http://rarediseaseday.us, and click on the “Raise Your Hand” icon during the month of February. Each unique click… Read More

February 15, 2015

TOPIC: Uncategorized

Partnering with Hemophilia Federation of America for Rare Disease Day and Hemophilia Awareness Month

Posted by Christina Jensen

The bleeding disorders community will be recognizing Rare Disease Day on February 28, Hemophilia Awareness Month during the entire month of March, and World Hemophilia Day of April 17. These important dates were created to raise awareness and education about rare conditions like hemophilia and bleeding disorders.

NORD is thrilled to partner with our member organization, Hemophilia Federation… Read More

December 23, 2014

TOPIC: Advocacy, Featured News, Industry, Medical, Patient Stories, Patients & Members, Research

The Will to Live and the Strength for a Cure

Posted by Lisa Sencen

The day Joshua Frase was born, his parents Alison and Paul, were given grave news about their newborn’s life – he most likely would not survive that day. His weakened muscles could not function normally which affected his ability to breathe on his own. Miraculously, Joshua survived, and when he was three-months old, a muscle biopsy revealed he had… Read More