Medical Archives - NORD (National Organization for Rare Disorders)

January 11, 2017

TOPIC: Advocacy, Medical, Press Releases

Orphan Drugs Represent 41 Percent of All New Medications

Posted at January 1, 2017 10:57 am by Jennifer Huron

Washington, D.C., January 11, 2017—Data released by the U.S. Food and Drug Administration (FDA) show that 9 of the 22 new medications approved in 2016, or 41 percent, are orphan drugs to treat rare diseases.

“The percentage of orphan drugs approved in recent years by FDA remains high and this is welcome news for the 30 million Americans with rare diseases,” said Peter L. Saltonstall,… Read More

Tags: Center for Drug Evaluation and Research, DMD, duchenne muscular dystrophy, FDA, John Jenkins, Office of New Drugs, orphan drug, Peter L. Saltonstall, SMA, Spinal Muscular Atrophy

October 26, 2016

TOPIC: Medical, Press Releases

NORD Publishes Physician Guide to Cutaneous T-Cell Lymphoma

Posted at October 10, 2016 10:52 am by Jennifer Huron

Washington, D.C., October 26, 2016—As part of its ongoing series to promote physician awareness of rare diseases, the National Organization for Rare Disorders has published The NORD Physician Guide to Cutaneous T-Cell Lymphoma (CTCL). This new resource is available free online to medical professionals around the world.

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

Tags: Marsha Lanes, NORD Physician Guides

August 18, 2016

TOPIC: Events, Get Involved, Industry, Medical, Patients & Members

Key Dates Approaching for NORD Summit

Posted at August 8, 2016 02:50 pm by Christina Jensen

Advanced Pricing Deadline is Friday, August 26

Register for NORD’s annual Rare Diseases & Orphan Products Breakthrough Summit (Oct. 17-18, Arlington, VA) by August 26 and save up to $400. More specific pricing information for the summit can be found here.

Poster Abstracts are due Friday, August 19

Calling all researchers – the theme for the 2016 poster session at… Read More

Tags: Call for Posters, FDA, Innovative Research, Life-Transforming Treatments, Medical Education Advancement, NIH, NORD Summit, Patient Community Building, Pharma, Poster Abstracts, rare disease community, Rare disease research, Rare Diseases and Orphan Products Breakthrough Summit, Rare Summit, research

June 28, 2016

TOPIC: Medical, Press Releases

NORD Publishes Physician Guide to Mitochondrial Myopathies

Posted at June 6, 2016 09:39 am by Jennifer Huron

As part of its ongoing series to promote physician awareness of rare diseases, the National Organization for Rare Disorders (NORD) has published a Physician Guide to Mitochondrial Myopathies, available free online to medical professionals around the world.

The NORD Physician Guide was written by two widely acknowledged experts on this topic, Dr. Michelangelo Mancuso of University Hospital of… Read More

Tags: Columbia University Medical Center, Dr. Michelangelo Mancuso, Dr. Michio Hirano, Marsha Lanes, MitoAction, Mitochondrial Disease, Mitochondrial Myopathies, NORD Physician Guides, Stealth BioTherapeutics, The United Mitochondrial Disease Foundation, United Mitochondrial Disease Foundation, University Hospital of Pisa

June 14, 2016

TOPIC: Featured News, Get Involved, Medical, Patients & Members, Sticky Posts for Advocate, Sticky Posts for Clinicians and Researchers, Sticky Posts for Industry, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families

NORD Speakers Bureau

Posted at June 6, 2016 10:11 am by Lisa Sencen

Need a Speaker for Your Classroom or Event? Contact NORD!

Teachers, medical school professors, and community members seeking speakers to talk about rare diseases in the classroom or at community events can contact NORD for help. Working closely with its 250 member organizations, NORD now has a Patient/Caregiver Speakers Bureau to match seasoned volunteer speakers with opportunities in their local… Read More

1
2
3
…
10
Next >