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January 18, 2016

TOPIC: Get Involved, Featured News, Events

Join the Running for Rare Team!

Posted at January 1, 2016 04:25 pm 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 at January 1, 2016 04:38 pm 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 5, 2016

TOPIC: Featured News, Events, Get Involved

Register for the 2016 Rare Impact Awards

Posted at January 1, 2016 04:15 pm by Lisa Sencen

For more than 25 years, NORD has hosted an annual celebration to honor the year’s top achievements in rare diseases. In 2016, we are expanding the program and want to hear from you about the difference makers.


They are patients, caregivers, advocates, doctors, researchers, legislators, regulators,… Read More

December 17, 2015

TOPIC: Advocacy, Industry, Events, Patient Stories, Get Involved, Press Releases, Featured News, Medical, Patients & Members, Research

Get Involved in Your State on Rare Disease Day

Posted at December 12, 2015 10:15 am by Jennifer Huron


On February 29, millions of people worldwide will come together to raise awareness about rare diseases and their impact on patients’ lives. This is our day to be heard, so speak up and tell your elected officials about what it is like to live rare. Here are some ideas to get started…

capitol-building-logo-design-concept-36879595State House… Read More

December 10, 2015

TOPIC: Featured News, Advocacy, Get Involved

Be a Hero: Help NORD Empower the Rare Disease Community in Washington D.C. and in all 50 States.

Posted at December 12, 2015 04:53 pm by Heidi Ross

2015 was a bellwether year for the NORD public policy team and some exciting growth was seen that could not have come at a better time; the next few years will be some of the most critical in rare disease public policy since the inception of the Orphan Drug Act in 1983.

Congress will consider legislation impacting all sectors of… Read More