Welcome to NORD
News and Events
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Sami Said, MD, NORD Medical Advisor and Friend NORD is deeply saddened by the death of Sami Said, MD, Distinguished Professor of the State University of NY. Dr. Said was a true friend to NORD and to the entire rare disease patient community. More > |
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FDA Launches New Resource for Patients FDA’s new Patient Network is meant to educate patients about medical product regulations and to help patients participate in FDA’s decision making process. More>
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NORD Corporate Council Met May 14 Speakers included representatives of Avalere Health and RegenceRx on the anticipated impact of the ACA. Slides will be distributed to Corporate Council members soon. |
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500 Attend NORD 30th Anniversary Celebration Historical heroes joined the next generation of advocates on stage at NORD's 30th Anniversary Celebration. More > |
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News for Patients
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New Film Facing Fabry Together This documentary follows the lives of families in Canada, Germany, Brazil and France who are living with Fabry disease. More > |
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Nominate a Caregiver for a Shire 2013 BRAVE Award The BRAVE Awards recognize and honor everyday people who distinguish themselves as a caregiver to another individual(s). More > |
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40th Community Launched on RareConnect There are now 40 disease-specific online patient communities on RareConnect. More > |
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SWF Celebrates 25th Anniversary The Sturge-Weber Foundation (SWF) is launching “Roots to a Cure," a fundraising campaign in hopes of reaching 1.25 million in its ongoing dedication to the Sturge-Weber Syndrome. More > |
News for Patient Organizations
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NORD Signs Letter Regarding Appointment of New AHRQ Director NORD recently signed on to a letter that was sent to the Secretary of HHS, regarding the appointment of a new director for AHRQ. Read the letter > |
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China Launches Rare Disease Alliance China Rare Diseases Prevention and Treatment Alliance has been formed by 17 medical institutions. More > |
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Join Whitehead Institute on Friday, May 3, in New York City for their signature spring event, the Whitehead Symposium. More > |
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Patient Advocacy Leadership Awards Genzyme has launched its third annual PAL Awards program for organizations that serve the lysosomal storage disorder patient community. More > |
News for Medical Professionals
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Pediatric Device Consortia Grant Program The 2013 Request for Applications for the Pediatric Device Consortia Grant Program has just published. More> |
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Call for Abstracts for Special Supplement to the Journal of General Internal Medicine AHRQ will sponsor a special journal supplement on research methods for evaluating health outcomes in rare diseases. More > |
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ACMG Recommendations for Reporting of Incidental Findings The ACMG issued recommendations about reporting of incidental findings when patients undergo exome or genome sequencing. More> |
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AAP Recommends Evaluation for Bleeding Disorders The symptoms of some bleeding disorders can be difficult to distinguish from abuse. AAP has guidance about when to evaluate for these conditions. More here and here. |
News for Industry
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New Drug Approvals in 2012 Highest in 16 Years The FDA approved 39 new drugs last year, the highest number since 1996. Approximately one-third of the approvals were for orphan drugs. Read more > |
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Save the Date for the 3rd Annual US Conference on Rare Diseases and Orphan Products The 3rd Annual DIA/NORD conference will be held Oct. 7-9 in Bethesda, MD. More > |
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Orphan Drugs Research & Commercialization Conference This meeting in Boston on May 8-10 provides a unique forum for all stakeholders in the rare disease community to collaborate and build meaningful relationships. Read more > |
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NORD Sends Comments to Congress About PCIP NORD sent a letter regarding the funding issues associated with the Pre-existing Condition Insurance Plan (“PCIP”) Program. Read the Letter > |
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