Rare Disease Summer Family Camp: A Place to Call Home
June 1-4 in Ashford, CT: Second-ever Rare Disease Summer Family Camp
Read morePublished February 13, 2017 by NORD
June 1-4 in Ashford, CT: Second-ever Rare Disease Summer Family Camp
Read morePublished January 27, 2017 by NORD
New Resource Aims to Provide Information for Patients, Families and the Public Washington, D.C., January 27, 2017—As part of its ongoing series to promote awareness and education of rare diseases, …
Continue reading “NORD Publishes Report on Spontaneous Intracranial Hypotension”
Read morePublished 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 14, 2016 by NORD
By Elizabeth Silva Anderson, ECD Global Alliance, a NORD Member Organization An interview with Erdheim-Chester Disease patient, Janet Bunge, in honor of Erdheim Chester Disease Awareness Week (#ECDAwareness), Sept. 12-17, 2016 …
Continue reading “A Group No One Applies to Join”
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 September 12, 2016 by NORD
This summer marked our one-year anniversary of hosting the Rare Disease of the Day campaign on our Facebook page and website. It has been a productive campaign, sharing information on …
Continue reading “Celebrating Awareness: One-Year Anniversary of Rare Disease of the Day”
Read morePublished September 9, 2016 by NORD
#KnowYourHeart to Understand Heart Disease in Your Family By Lisa Yue, Founding Executive Director of Children’s Cardioymyopathy Foundation, a NORD Member Organization Every week, 25 children in the United States …
Continue reading “September is Children’s Cardiomyopathy Awareness Month”
Read morePublished August 18, 2016 by NORD
Researchers have the opportunity to present research to a large and diverse audience during the 2016 #NORDSummit
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