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February 18, 2016

TOPIC: Research

NORD Awards New Research Grants for Rare Disease Research

Posted at February 2, 2016 09:00 am 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

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 9, 2015

TOPIC: Press Releases, Research

NORD Developing 20 Natural History Studies for 20 Rare Diseases

Posted at December 12, 2015 04:58 pm by Jennifer Huron

To further the study of rare diseases, the U.S. Food and Drug Administration (FDA) has awarded a $250,000 grant to the National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders.  NORD will use the grant to develop 20 natural history studies for 20 rare diseases based on… Read More

December 4, 2015

TOPIC: Medical, Research

New SIDS Study Says Other Factors May Increase Risk

Posted at December 12, 2015 10:08 am by Jennifer Huron

Sudden Infant Death Syndrome (SIDS) is the latest rare disease to have trended on Facebook, following the release of a new study in Pediatrics journal on December 2. The study says that there are other factors, such as babies being exposed to smoking, which can increase the risk of sudden infant death syndrome. The study is being talked about… 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