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June 13, 2017

TOPIC: Medical, Press Releases, Research, Sticky Posts for Clinicians and Researchers

NORD Publishes New Rare Disease Report on CARD9 Deficiency

Posted at June 6, 2017 09:28 am by Christina Jensen
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Washington, D.C., June 13, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on CARD9 Deficiency. This new resource is available free online to individuals around the world.

As the primary advocacy organization in the U.S. for people who have rare diseases, NORD provides… Read More

May 30, 2017

TOPIC: Featured News, Medical, Research, Sticky Posts for Clinicians and Researchers

NORD Publishes Report on Hereditary Sensory Autonomic Neuropathy Type 1E

Posted at May 5, 2017 09:23 am by Christina Jensen
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Washington, D.C., May 30, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Hereditary Sensory Autonomic Neuropathy Type 1E (HSAN1E). This new resource is available free online to individuals around the world.

As the primary advocacy organization in the U.S. for… Read More

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
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 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 24, 2017

TOPIC: Press Releases, Research, Sticky Posts for Homepage

NORD Awards New Research Grants for Rare Disease Research

Posted at February 2, 2017 10:26 am by Jennifer Huron
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Washington, D.C.—February 24, 2017—The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders, has awarded seven new research grants to fund rare disease research.

Research grants awarded for 2016 Requests for Proposals include:

For the study of Alveolar Capillary Dysplasia with Misalignment of the Pulmonary Veins (ACD/MPV), with… 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
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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 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