Rare Disease News

Today is Rare Disease Day®

Published February 29, 2016 by NORD

Categorized in -

On 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 …

Continue reading “Today is Rare Disease Day®”

Running on Air for Rare Disease Day

Published February 11, 2016 by NORD

Categorized in -

“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 …

Continue reading “Running on Air for Rare Disease Day”

Rare Disease Day Video for 2016 Launched

Published February 4, 2016 by NORD

Categorized in -

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

Join the Running for Rare Team!

Published January 18, 2016 by NORD

Categorized in -

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

Categorized in -

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 …

Continue reading “FDA Invites Patient Organizations to Organize Their Own Meetings on the PFDD Model”

Register for the 2016 Rare Impact Awards

Published January 5, 2016 by NORD

Categorized in -

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

Categorized in -

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.

CCHS Family Network

Published December 15, 2015 by NORD

Categorized in -

Featured News

The CCHS Family Network is ending the isolation and angst of families dealing with a rare diagnosis where knowledge and treatment is extremely limited.

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

Categorized in -

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

Categorized in -

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

Rare Disease News

Access State Report Card Data