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February 18, 2016

TOPIC: Research

NORD Awards New Research Grants for Rare Disease Research

Posted by Jennifer Huron

 The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders, has awarded six new research grants to fund rare disease research.

“NORD research grants are funded primarily by patients, patient organizations, families and friends of patients who make possible the study of diseases for which no other funding is… Read More

February 11, 2016

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

Running on Air for Rare Disease Day

Posted 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, Patients & Members, Advocacy, Events, Get Involved

Rare Disease Day Video for 2016 Launched

Posted 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 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

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