Welcome to NORD
News and Events
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Join NORD in Supporting TREAT and FAST Read about proposed legislation to accelerate the development of rare disease therapies and how you can show your support for it. More > |
New Free NORD Resource for Medical Professionals NORD has launched a new online tool to provide a resource for clinicians about specific rare disorders to facilitate the timely diagnosis and treatment of their patients Read More > |
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DIA Global Forum Rare Disease Section Several articles in the February 2012 issue of the journal, Global Forum, published by the Drug Information Association, focused on rare diseases. Read the section > |
6th European Conference on Rare Diseases and Orphan Products The meeting covers research, development of treatments, health care, social care, public health and support and will be held in Brussels May 23-25. Read More > |
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News for Patients
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Rare Disease Day Advocate on Dennis Miller Show Cindy Abbot, who has Wegner’s Granulomatosis, talks about her experience in the Iditarod and her focus on raising awareness for rare diseases. Listen to the interview > |
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. Read More > |
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NIH Clinical Research Trials and You NIH has developed a new website to help people learn more about clinical trials, why they matter, and how to participate. Visit the site > |
Thank you for a great Rare Disease Day! This year, Rare Disease Day was observed around the world on February 29, 2012. View the Rare Disease Day US website to learn more > |
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News for Patient Organizations
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Consumer Representatives Sought The FDA is seeking representatives from consumer organizations to participate in select advisory committees. Those interested should respond by March 14. More > |
Research Grants Announced for Myocarditis The Myocarditis Foundation announced the award of two research grants for 2012-2013. View the press release > |
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The Center for LAM Research and Clinical Care at Brigham and Women’s Hospital has been awarded a $1 million grant from the U.S. Department of Defense to fund their work on lymphangioleiomyomatosis (LAM). |
Social Security Administration Teleconference NORD recently hosted a teleconference for current member organizations with the SSA about the Compassionate Allowances Program. Read more and listen to the recording > |
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News for Medical Professionals
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MA Medical Society Discusses Rare Diseases on Physician Focus Watch Dr. Alan Beggs of The Manton Center for Orphan Disease Research at Children’s Hospital Boston talk about rare diseases. View the program > |
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Two Neurology Conferences in Australia The Joint 12th International Child Neurology Congress and 11th Asian and Oceanian Congress of Child Neurology will occur May 27-June 1 in Australia. Learn More > |
New Free NORD Resource for Medical Professionals NORD has launched a new online tool to provide a resource for clinicians about specific rare disorders to facilitate the timely diagnosis and treatment of their patients Read More > |
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News for Industry
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Read blog by NORD's RN on new "Building Blocks" site recently launched by Amylin. Read more here> |
FDA and Industry Reach Agreement in Principle on Medical Device User Fees Details of the agreement, such as the fee structure, are expected to be finalized soon. More > |
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Draft Guidance Issued on Biosimilar Product Development The FDA has issued three draft guidance documents on biosimilar product development to assist industry in developing such products in the U.S. Read More > |
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Save the Date for NORD's Corporate Council Meeting NORD's next Corporate Council meeting will be held on May 15th in Washington, DC. More details will be coming soon. Learn more about the Corporate Council > |
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