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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

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

September 8, 2015

TOPIC: Patients & Members, Events

Rare Disease Artists’ Work Traveling Globe to Raise Awareness

Posted at September 9, 2015 02:30 pm by Jennifer Huron

cystinosisThe Cystinosis Research Network (CRN), a 501(c)(3) charitable organization and NORD member, created the first-ever “Dream, Achieve, Inspire” art exhibit prepared entirely by patients with cystinosis, a rare, genetic-metabolic disease. Paintings, poems, sculptures, dance, and photography from 107 individuals with cystinosis covering 30 countries came together under Exhibit Chairperson, Katie Larimore.

The art exhibit opened… Read More