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News and Events
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NORD Announces 2012 Partners in Progress Celebration Honorees NORD honored members of the Congress, patient advocates, researchers, and companies that have brought new therapies to market on May 15. Read More > |
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willing_to_please_trailer_sdhalf lif willie_gonzalezwillie up closewillis specie 60 Minutes Features Rare Diseases The show profiled Dr. William Gahl at NIH’s Undiagnosed Disease Program and a variety of patients and cases he has worked on. View the episode >
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NORD is funding research seed grant opportunities through its international clinical research program. View the RFPs > |
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NORD Calls Bill Most Important Since Orphan Drug Act NORD applauds Senate legislation and says it contains the most comprehensive improvements to policy for rare disease therapies since the Orphan Drug Act of 1983. Read More > |
News for Patients
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Shire Announces Opportunity to Nominate Individuals for the BRAVE Awards The program is an initiative to acknowledge ordinary people who give of themselves by caring for others in a meaningful, dedicated and selfless manner, recipients receive $10,000. Learn More > |
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NORD RN Quoted in Compelling Article about Living with Stiff Person Syndrome The Mobility Project recently published an article about understanding and coping with the challenges of rare diseases. Read the article > |
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Who needs access? You need access! This website and blog promote public access to publications of government-funded research, this post provides perspective about why access to scientific literature is important. Learn More > |
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Australia Making Progress in Rare Disease Advocacy Rare disease advocates in Australia are making progress in their push for a national plan for rare diseases and a national umbrella organization to support rare disease patients. Learn more > |
News for Patient Organizations
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Vasculitis Foundation Awareness Video One of NORD's Member Organizations, the Vasculitis Foundation, recently created a new awareness video. View the Video > |
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Apply for a $25,000 Philanthropy Grant DIA is accepting applications that increase the knowledge related to patient-centered health care; developing patient groups; and improving health care alliances. Learn More > |
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Report on Risk Tolerance Initiative Read a summary of the 1st FDA Patient Network Meeting which was designed to initiate a discussion of benefit-risk decision-making with the patient community. Read more > |
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Petition to expand NIH Public Access Policy across all US Federal Science Agencies NORD is supporting a petition encouraging the Obama Administration to require free access over the Internet to scientific journal articles arising from taxpayer-funded research. Read more > |
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News for Medical Professionals
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Am. College of Medical Genetics and Genomics Releases Policy Statement The ACMG has issued a statement that outlines recommended principles to guide clinicians in the clinical application of genome sequencing. Read the statement > |
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NIH Launches Collaborative Effort with Industry and Researchers NIH has announced a program that will match researchers with compounds developed by companies to help scientists explore new treatments. More > |
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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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Forum on Orphan Drugs Planned for 2012 Bio International Convention williselement bobbin-comic.com/pontiac-awas-my-own-prison/ worldrolnetpwn |
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NIH Launches Collaborative Effort with Industry and Researchers to Speed Drug Development NIH has announced a program that will match researchers with compounds developed by pharmaceutical companies to help scientists explore new treatments for patients. 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 > |
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NORD Forum Speaker: Bills Hold Major Promise for Rare Disease Patients NORD's Corporate Council meeting was held on May 15th in Washington, DC. Learn more about the Corporate Council meeting > |
