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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 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

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 4, 2015

TOPIC: Press Releases

NORD Issues Statement on NIH Appointment of New Director for Office of Rare Diseases Research

Posted at September 9, 2015 10:08 am by Jennifer Huron

The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on the announcement that Petra Kaufmann, M.D., M.Sc., has been named director of the Office of Rare Diseases Research (ORDR), part of… Read More

August 24, 2015

TOPIC: Press Releases, Medical, Sticky Posts for Clinicians and Researchers, Patient Stories

New Video from NORD Promotes Awareness of Rare Movement Disorder Neurogenic Orthostatic Hypotension

Posted at August 8, 2015 12:48 pm by Jennifer Huron

A new video released today by the National Organization for Rare Disorders (NORD) fills a gap in health care by educating patients and doctors about a rare medical condition known as Neurogenic Orthostatic Hypotension (nOH), and how to improve patient outcomes.

“Living with a rare condition like nOH affects every part of your daily life,” says Mary Dunkle, Vice President of… Read More