Published January 9, 2017 by NORD
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 …
Continue reading “First Natural History Registry for Necrotizing Enterocolitis”
Read morePublished December 23, 2016 by NORD
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 …
Continue reading “Largest-Ever Study of SYNGAP1 (MRD5), Linked to Autism, was Launched”
Read morePublished November 3, 2016 by NORD
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 …
Read morePublished September 22, 2016 by NORD
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 …
Read morePublished September 12, 2016 by NORD
Please take a moment to help PSU graduate student, Kerri, make a change for the rare disease community.
Read morePublished August 16, 2016 by NORD
NORD research grants are made possible by donations. Request for Proposals are now available online.
Read morePublished May 23, 2016 by NORD
Learn more about the Undiagnosed Diseases Network (UDN) by registering for this free webinar (June 3).
Read morePublished May 23, 2016 by NORD
NORD’s Rare Diseases and Orphan Products Breakthrough Summit will be held in Arlington, VA October 17-18
Read morePublished May 12, 2016 by NORD
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. …
Continue reading “NORD to Hold Rare Diseases Roundtable”
Read morePublished April 28, 2016 by NORD
WASHINGTON, D.C./BOSTON ― April 28, 2016 ―The National Organization for Rare Disorders (NORD), the country’s leading voice for the rare disease patient community, is collaborating with Trio Health to leverage …
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