Scroll
To Top

September 16, 2015

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

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

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

June 17, 2015

TOPIC: Press Releases, Featured News, Research, Advocacy

Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases

Posted at June 6, 2015 12:38 pm by Jennifer Huron

 

Today, the National Organization for Rare Disorders (NORD), Biotechnology Industry Organization (BIO), and Ernst & Young released “Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases,” a new white paper examining the role of the Orphan Drug Tax Credit (ODTC) on rare disease drug discovery.   Patients share their experiences in profiles that accompany this study.  Read… Read More

May 28, 2015

TOPIC: Press Releases, Featured News, Patients & Members, Advocacy

Global Voice for Rare Disease Patients Launches Today: Rare Diseases International

Posted at May 5, 2015 10:52 am by Jennifer Huron

rdinternational

 

 

 

 

Madrid and Washington, D.C.—May 28, 2015—The global voice for rare disease patients launches today.  More than 60 patient representatives from 30 countries are gathering in Madrid, Spain for the inauguration of Rare Diseases International (RDI) and to adopt a joint declaration to advocate for rare diseases as an international public… Read More