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
Washington, D.C., November 3, 2016—The Fibrous Dysplasia Foundation and the National Organization for Rare Disorders announce the launch of an ambitious study to research fibrous dysplasia/McCune-Albright syndrome (FD/MAS). The new study, the FD/MAS Patient Registry, creates a platform for patients… Read More
To further the study of rare diseases, the U.S. Food and Drug Administration (FDA) has awarded a $250,000 grant to the National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders. NORD will use the grant to develop 20… Read More
To Support Research and Gain a Better Understanding of VHL and other Forms of Cancer, Patients and Medical Experts Around the World will Share Critical Information in Search of a Cure! (more…)