Medical Archives - NORD (National Organization for Rare Disorders)

August 21, 2017

NORD Issues Statement in Response to the Signing by President Trump of the Food and Drug Administration Reauthorization Act of 2017

Posted at August 8, 2017 02:33 pm by Christina Jensen

Washington, D.C., August 21, 2017—Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today issued the following statement in response to the signing by President Trump of the Food and Drug Administration Reauthorization Act of 2017:

“We thank President Trump for signing… Read More

Tags: {eter L. Saltonstall, biologics, FDA, FDA Rare Diseases Program, FDA Reauthorization Act of 2017, FDARA, Food and Drug Administration, Food and Drug Administration Reauthorization Act of 2017, medical device, orphan drugs

August 15, 2017

TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patients & Members, Sticky Posts for Homepage

Advance the Dialogue at the NORD Rare Summit

Posted at August 8, 2017 09:49 am by Christina Jensen

It has been an interesting year for healthcare reform and the Orphan Drug Act, and as I’m sure you are aware; the conversation isn’t over yet. Major changes to healthcare and tax reform continue to be discussed and that is why it is so important that now, more than ever, rare disease stakeholders come together to advance the dialogue on these… Read More

Tags: Dr. Scott Gottlieb, FDA, healthcare, healthcare reform, Mike Porath, NORD Rare Summit, NORD Summit, Orphan Drug Act, Orphan products, Policy, Rare Diseases, Rare Diseases and Orphan Products Brekathrough Summit, Rare Summit, The Mighty

July 25, 2017

TOPIC: Featured News, Medical, Patients & Members, Research

NORD Publishes New Rare Disease Report on Retinal Vasculopathy with Cerebral Leukodystrophy (RVCL)

Posted at July 7, 2017 03:41 pm by Christina Jensen

Washington, D.C., July 25, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Retinal Vasculopathy with Cerebral Leukodystrophy (RVCL). This new resource is available free online to individuals around the world.

As the primary advocacy organization in the U.S. for people who have… Read More

Tags: Dr. John Atkinson, Dr. M Kathryn Liszewski, Genetic Counselor, Marsha Lanes, Rare Disease Database, Rare Disease Report, rare genetic disease, research, Retinal Vasculopathy with Cerebral Leukodystrophy, RVCL, Washington University School of Medicine

July 20, 2017

TOPIC: Events, Featured News, Get Involved, Industry, Medical, Research

NORD Announces Keynote Speakers for 2017 Rare Diseases and Orphan Products Breakthrough Summit

Posted at July 7, 2017 09:54 am by Christina Jensen

Washington, D.C. July 19, 2017 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced two keynote speakers for its 2017 Rare Diseases and Orphan Products Breakthrough Summit, to be held October 16-17 in Washington, D.C.

The meeting, which takes place on an annual basis, brings… Read More

Tags: Data-Sharing, Dr. Scott Gottlieb, FDA, FDA Commissioner, Keynote Address, Mike Porath, NIH, NORD Summit, Patient Assistance Programs, Rare Disease Summit, Rare Diseases and Orphan Products, Rare Diseases and Orphan Products Breakthrough Summit, Right to Try, The Mighty, TheMighty.com

July 7, 2017

TOPIC: Featured News, Medical, Research

NORD Publishes New Rare Disease Report on Bosma arhinia microphthalmia (BAM) syndrome

Posted at July 7, 2017 05:10 pm by Christina Jensen

Washington, D.C., July 7, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Bosma arhinia microphthalmia (BAM) syndrome. This new resource is available free online to individuals around the world.

As the primary advocacy organization in the U.S. for people who have rare… Read More

Tags: BAM Syndrome, Bosma arhinia microphthalmia (BAM) syndrome, Dr. John Graham, Dr. Natalie Shaw, National Institute of Environmental Health Sciences, National Institutes of Health, NIH, Rare Disease Database, Rare Disease Report, UCLA

1
2
3
…
12
Next >