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March 11, 2016

TOPIC: Press Releases, Events, Get Involved

Running for Rare Marathon Team Expands Under NORD

Posted at March 3, 2016 12:18 pm by Jennifer Huron

running4rare_NORDThe Running for Rare marathon team will expand under new governance with the National Organization for Rare Disorders (NORD), the leading independent nonprofit representing all people with rare diseases and disorders. NORD will take over the program, which uses running as a platform to raise awareness and support for… Read More

February 29, 2016

TOPIC: Events, Patient Stories, Get Involved, Featured News, Members, Advocacy

Today is Rare Disease Day®

Posted at February 2, 2016 11:00 am by Jennifer Huron

rdd-social-profileOn this day, join the 30 million Americans who are making the voice of rare diseases heard. Your participation on Rare Disease Day means more awareness and hope for 1 in 10 people and families across the country, and others around the world.

Social Media – We’re Trending!

Together, let’s keep… Read More

February 11, 2016

TOPIC: Featured News, Members, Patient Stories, Get Involved

Running on Air for Rare Disease Day

Posted at February 2, 2016 12:00 pm by Lisa Sencen

“I want to shake up what people think is possible,” says Mary Kitlowski – “ both people with rare diseases, and people without. If I can make a difference by doing it, it makes it worth it.”

Mary has taken on what for most seems insurmountable – running races across America with an oxygen tank strapped to her… Read More

February 4, 2016

TOPIC: Featured News, Members, Advocacy, Events, Get Involved

Rare Disease Day Video for 2016 Launched

Posted at February 2, 2016 04:21 pm by Lisa Sencen

On Wednesday, EURORDIS released the official, global video for 2016 Rare Disease Day. The video focuses on the special moments in the lives of people living with a rare disease. EURORDIS says, “everybody experiences those special moments with their relatives, children, friends and colleagues. For people living with or affected by a rare disease, the emotion during… Read More

January 21, 2016

TOPIC: Get Involved

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

Posted at January 1, 2016 05:17 pm by Lisa Sencen

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 of rare diseases with Dr. Richard Besser, Chief of the ABC News Medical/Health Unit. NORD will be live tweeting with Dr. Besser… Read More