Washington, D.C., November 13, 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 Li-Fraumeni Syndrome. This new resource is available free online to individuals around the world.
As the primary advocacy organization in the… Read More
Washington, D.C., October 5, 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 RYR-1-Related Diseases. This new resource is available free online to individuals around the world.
As the primary advocacy organization in the… Read More
Washington, D.C., April 4, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announces the recent hire of Debbie Drell as Director of Membership. In her role, Debbie will be responsible for overseeing NORD’s Membership programs, which support the… Read More
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 &… Read More
New Resource Aims to Provide Information for Patients, Families and the Public
Washington, D.C., January 27, 2017—As part of its ongoing series to promote awareness and education of rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Spontaneous Intracranial Hypotension (SIH). This… Read More