Rare Disease News

NORD Awards New Research Grants for Rare Disease Research

Published February 24, 2017 by NORD

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Research Grants are available from NORD for the study of rare diseases. The deadline to send in initial applications is Friday, June 23.

First Natural History Registry for Necrotizing Enterocolitis

Published January 9, 2017 by NORD

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Naugatuck, CT, and Danbury, CT, January 09, 2017—The Morgan Leary Vaughan Fund (Morgan’s Fund) has launched the first natural history registry for Necrotizing Enterocolitis (NEC)–an inflammatory disease that leads to …

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Largest-Ever Study of SYNGAP1 (MRD5), Linked to Autism, was Launched

Published December 23, 2016 by NORD

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Research study is open to participants worldwide to advance understanding and treatments for rare disease causing non-syndromic intellectual disability ranging from mild to severe with attention deficits, impulsivity, and/or mood …

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Fibrous Dysplasia Foundation and NORD Launch Cutting-Edge Study of Fibrous Dysplasia/McCune-Albright Syndrome

Published November 3, 2016 by NORD

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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 …

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NORD Converges on Capitol Hill for Rally for Medical Research Hill Day to Advocate for Increased Funding for the National Institutes of Health (NIH)

Published September 22, 2016 by NORD

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More than 300 organizations join forces to ask Congress to provide robust, sustained, and predictable budget increases for the NIH Washington, D.C., September 22, 2016— The National Organization for Rare …

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Penn State Graduate Rare Disorder Survey

Published September 12, 2016 by NORD

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Please take a moment to help PSU graduate student, Kerri, make a change for the rare disease community.

NORD Announces Research Grants Available for Study of Rare Diseases

Published August 16, 2016 by NORD

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Research

NORD research grants are made possible by donations. Request for Proposals are now available online.

Register for a FREE Webinar on the Undiagnosed Diseases Network (UDN)

Published May 23, 2016 by NORD

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Learn more about the Undiagnosed Diseases Network (UDN) by registering for this free webinar (June 3).

NORD Summit 2016

Published May 23, 2016 by NORD

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NORD’s Rare Diseases and Orphan Products Breakthrough Summit will be held in Arlington, VA October 17-18

NORD to Hold Rare Diseases Roundtable

Published May 12, 2016 by NORD

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The National Organization for Rare Disorders (NORD) will host a roundtable on May 17 with a wide range of stakeholders who are creating positive change across the rare disease community. …

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