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March 31, 2017

TOPIC: Patients & Members, Press Releases, Research

International Pemphigus & Pemphigoid Foundation Launches Largest-Ever Study of Pemphigus and Pemphigoid

Posted at March 3, 2017 09:55 am by Jennifer Huron

 Research study is open to participants worldwide to advance understanding and treatments for rare disease causing blistering that may be accompanied by severe pain, itching, burning, and stinging.

ippf logoSacramento, CA and Washington, D.C., March 31, 2017—The International Pemphigus & Pemphigoid Foundation (IPPF), a NORD member organization, has launched… Read More

February 13, 2017

TOPIC: Events, Featured News, Get Involved, Patients & Members, Sticky Posts for Homepage, Sticky Posts for Patients and Families

Rare Disease Summer Family Camp: A Place to Call Home

Posted at February 2, 2017 04:44 pm by Christina Jensen
nord-hwgc-rare-disease-summer-family-camp

NORD is pleased to be working with The Hole in the Wall Gang Camp again this year to host the second-ever rare disease summer family camp, June 1-4 in Ashford, Connecticut. For the second year, they will be hosting a special Summer Family Camp for children and families impacted by rare diseases to join together for a weekend of… Read More

January 27, 2017

TOPIC: Patients & Members, Press Releases

NORD Publishes Report on Spontaneous Intracranial Hypotension

Posted at January 1, 2017 02:40 pm by Jennifer Huron

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, the National Organization for Rare Disorders (NORD) has published a report on Spontaneous Intracranial Hypotension (SIH). This new resource is available free online to individuals around… Read More

January 9, 2017

TOPIC: Patients & Members, Press Releases, Research

First Natural History Registry for Necrotizing Enterocolitis

Posted at January 1, 2017 11:02 am by Jennifer Huron

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 necrosis of the intestine. NEC currently has no cure.

“The Natural History Registry for Necrotizing Enterocolitis (NEC Registry) will provide a complete picture of each patient’s experience with NEC,” said… Read More

December 23, 2016

TOPIC: Patients & Members, Press Releases, Research

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

Posted at December 12, 2016 12:47 pm by Jennifer Huron

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 disorders. Seventy to eighty percent of children with SYNGAP1 also have some type of epilepsy and the SYNGAP1 gene has been linked to autism.

Houston, Texas, and Danbury, CT, December… Read More