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December 17, 2015

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

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 2, 2015

TOPIC: Featured News, Medical, Patients & Members, Research, Industry, Get Involved

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

Posted at December 12, 2015 02:43 pm by Mary Dunkle

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 careers.

Today’s healthcare professionals are aware that… Read More

November 20, 2015

TOPIC: Advocacy, Industry

National Spotlight on FDA and Duchenne Muscular Dystrophy: What This Means for Everyone with a Rare Disease

Posted at November 11, 2015 03:23 pm by Jennifer Huron

fdaNext week, a Food and Drug Administration panel of experts will hold the first of two meetings to review two drugs designed to slow the muscle wasting effects associated with Duchenne Muscular Dystrophy (DMD).  These much-anticipated events provide hope for children and families living with this devastating and fatal… Read More

October 12, 2015

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

Raise Your Voice: Rare Disease Day 2016 is Coming

Posted at October 10, 2015 10:56 am by Jennifer Huron

Rare Disease Day Handprints Across America

Date: February 29, 2016
Global Theme: Patient Voice
Global Slogan: Join us in making the voice of rare diseases heard

By definition, each rare disease affects a small segment of the population, yet combined the 7,000 known rare diseases affect 30 million people -… Read More

September 16, 2015

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

Rare Disease Day 2016 Theme and Slogan Announced!

Posted at September 9, 2015 04:52 pm by Jennifer Huron

Rare Disease DayTheme: Patient Voice
Slogan: Join us in making the voice of rare diseases heard

It’s here! As the official sponsor and host of Rare Disease Day in the U.S., NORD is excited to announce the theme for Rare Disease Day 2016 with EURORDIS, our partner and the… Read More