Rare Disease News

Rare Disease Day Video for 2016 Launched

Published February 4, 2016 by NORD

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Watch the global video for Rare Disease Day with your friends, family, and colleagues!

Join NORD and ABC News for a Rare Disease Day Tweetchat on March 1

Published January 21, 2016 by NORD

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Join us for a nationwide conversation about rare diseases on: Tuesday, March 1, 2016 1:00 – 2:00 p.m. EST In celebration of Rare Disease Day®, NORD will co-sponsor a tweetchat on the topic …

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Join the Running for Rare Team!

Published January 18, 2016 by NORD

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Patients, caregivers, and runners: sign up to get involved with the Running for Rare Team!

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

Published January 12, 2016 by NORD

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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 …

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Register for the 2016 Rare Impact Awards

Published January 5, 2016 by NORD

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Join us in celebrating the rare disease community. Register for the 2016 Rare Impact Awards.

Get Involved in Your State on Rare Disease Day

Published December 17, 2015 by NORD

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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.

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

Published December 10, 2015 by NORD

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Thanks to the support of our partners and donors, NORD has launched new initiatives that empower the rare disease community in every state and strengthen the patient voice in Washington D.C.

Pachyonychia Congenita Project

Published December 7, 2015 by NORD

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Connecting patients with Pachyonychia Congenita, PC Project says that it is “all about love”.

Be a Hero-Help NORD Help Patients Obtain Life-Saving Treatments

Published December 4, 2015 by NORD

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When you or a beloved family member is facing serious illness, the last thing you need to be concerned with is how you will pay for the medication.

Be a Hero: Help NORD Educate Current and Future Medical Professionals

Published December 2, 2015 by NORD

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Education has always been a key component of NORD’s mission and this year we expanded our outreach to two vitally important audiences – medical professionals and students preparing for health-related …

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