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January 18, 2016

TOPIC: Featured News, Events, Get Involved

Join the Running for Rare Team!

Posted by Lisa Sencen

For the ninth consecutive year, runners will join together to help raise awareness for rare diseases while fundraising to support the NORD Undiagnosed Diseases Network (UDN) Patient Assistance Program.

The 2016 team is looking for runners to join the Boston, Providence Marathon and half Marathon teams, as well as RARE Community Partners. When you join the Running for Rare Team,… Read More

January 12, 2016

TOPIC: Featured News, Patients & Members, Get Involved

FDA Invites Patient Organizations to Organize Their Own Meetings on the PFDD Model

Posted by Mary Dunkle

When the Patient-Focused Drug Development (PFDD) Initiative was first announced as part of the 2012 PDUFA reauthorization, many patient organizations expressed concern that the initiative’s public meetings would focus on just 20 groups of diseases. However, FDA has now provided a pathway for extending the model to many other diseases.

In a blog published this week, Theresa Mullin,… Read More

January 4, 2016

TOPIC: Press Releases, Advocacy

FDA Approves 21 Orphan Drugs for Rare Diseases in 2015, Sets Record for Second Consecutive Year

Posted by Jennifer Huron

fdaThe U.S. Food and Drug Administration announced today it approved 21 new orphan drugs to treat rare diseases in 2015, nearly half (47 percent) of all novel new drugs approved for the year.  This is the second consecutive year in which the FDA approved more orphan drugs for… Read More