August 15, 2017
TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patients & Members, Sticky Posts for Homepage
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
July 25, 2017
TOPIC: Featured News, Medical, Patients & Members, Research
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
May 8, 2017
TOPIC: Featured News, Industry, Patients & Members
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
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
February 13, 2017
TOPIC: Events, Featured News, Get Involved, Patients & Members, Sticky Posts for Patients and Families
Posted at February 2, 2017 04:44 pm by Christina Jensen
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