Welcome to NORD
News and Events
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NORD Releases Landmark Study of FDA Orphan Drug Approvals NORD has released a major new study examining FDA approvals of non-cancer orphan drugs since 1983. Read the press release > |
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A Free Rare Disease Day Resource for Teachers For Rare Disease Day 2012 (Feb. 29th), high school biology and/or health teachers may download this free curriculum supplement. Read More > |
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7th ICORD Meeting to Take Place in Japan Registration is open for the International Conferences for Rare Diseases and Orphan Drugs. The conference is in Japan this February. Read More > |
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NORD has awarded seven new grants for the study of rare diseases. Read More > |
News for Patients
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New UDP Applications Being Accepted The National Institutes of Health (NIH) Undiagnosed Diseases Program (UDP) reopened the application process on Dec 1. More > |
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NORD and EURORDIS Launch 16 Rare Disease Communities Ehlers-Danlos syndrome is the 15th disease to launch on the Rare Disease Communities site, an international online patient community. Visit the site and learn more about the project > |
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Study for Parents of Children with Rare Disorders A PhD student at Wurzweiler School of Social Work is conducting a study of parents of children with rare disorders who had a delayed diagnosis. The study involves a phone interview and a short questionnaire. More > |
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View the 2012 Rare Disease Day US Website This year, Rare Disease Day will be observed around the world on February 29, 2012. Learn more > |
News for Patient Organizations
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FDA 101 From NORD's Chief Medical Officer View lectures from Dr. Timothy Cote on why we need FDA and how it works. More > |
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Video from the U.S. Hereditary Angioedema Association The U.S. Hereditary Angioedema Association has released a new PSA that brings the symptoms of HAE to life in a way never before seen. View the video > |
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Congress has approved a 2012 spending bill that includes funding for an NIH center to catalyze the translation of scientific discoveries into new drugs, diagnostics, and devices. More > |
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Public health officials and patient organizations in Australia are working together to create a more coordinated approach to rare diseases. Read a new newsletter on this topic > |
News for Medical Professionals
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Taubman Medical Research Institute Establishes $100,000 Annual Prize April 1 is the deadline for nominations for a new translational science prize to recognize a medical scientist for work to transform laboratory discoveries into clinical application. More > |
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Sanford-Burnham to Host Third Annual Rare Disease Day Symposium The event will focus on Identifying and Treating Genetic Diseases in Children. More > |
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NIH to Host Workshop in Bethesda, MD NIH is sponsoring a scientific workshop on Rare Syndromic Body Fat Disorders. Read More > |
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News for Industry
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FDA approves first drug to treat a rare bone marrow disease FDA approved Jakafi (ruxolitinib), the first drug approved to specifically treat patients with the bone marrow disease myelofibrosis. Read more here> |
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Read draft guidance for industry on Humanitarian Use Device (HUD) posted Dec. 13 by FDA. More > |
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Overview of Drug Review in 2011 View recent presentation by John Jenkins, Director of the Office of New Drugs in FDA's CDER, providing overview of drug review in 2011. Read More > |
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Lawrence C. Weaver Has Passed Away Weaver was recognized nationally as a visionary leader for his contributions to pharmacy education, research and practice. More > |
