Patients & Members Archives - NORD (National Organization for Rare Disorders)

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

May 8, 2017

TOPIC: Featured News, Industry, Patients & Members

Sign-on letter from 120 patient organizations urging Congress to reauthorize FDA User Fee Agreements

Posted at May 5, 2017 02:54 pm by Amanda DeBellis

Washington, D.C., May 8, 2017—On Friday, the National Health Council (NHC) and the National Organization for Rare Disorders (NORD), submitted a letter from more than 120 patient advocacy organizations to members of Congress urging them to swiftly reauthorize the FDA user fees.

The letter, in part, reads, “The chronic and rare disease and disability patient communities… Read More

March 31, 2017

TOPIC: Patients & Members, Press Releases, Research

International Pemphigus & Pemphigoid Foundation Launches Largest-Ever Study of Pemphigus and Pemphigoid

Posted at March 3, 2017 09:55 am by Jennifer Huron

Research study is open to participants worldwide to advance understanding and treatments for rare disease causing blistering that may be accompanied by severe pain, itching, burning, and stinging.

Sacramento, CA and Washington, D.C., March 31, 2017—The International Pemphigus & Pemphigoid Foundation (IPPF), a NORD member organization, has launched… Read More

Tags: FDA, natural history, natural history studies, Natural History Study Project, NORD Member Organization, Peter L. Saltonstall

February 13, 2017

TOPIC: Events, Featured News, Get Involved, Patients & Members, Sticky Posts for Patients and Families

Rare Disease Summer Family Camp: A Place to Call Home

Posted at February 2, 2017 04:44 pm by Christina Jensen

nord-hwgc-rare-disease-summer-family-camp

NORD is pleased to be working with The Hole in the Wall Gang Camp again this year to host the second-ever rare disease summer family camp, June 1-4 in Ashford, Connecticut. For the second year, they will be hosting a special Summer Family Camp for children and families impacted by rare diseases to join together for a weekend of… Read More

Tags: Lisa Phelps, Summer Camp, The Hole in the Wall Gang Camp

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