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Archives for: April 4th, 2017

NORD Names New Director of Membership

Written by Jennifer Huron on April 4, 2017
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Washington, D.C., April 4, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announces the recent hire of Debbie Drell as Director of Membership.  In her role, Debbie will be responsible for overseeing NORD’s Membership programs, which support the… Read More

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

Written by Jennifer Huron on March 31, 2017
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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 &… Read More

NORD Publishes Report on Spontaneous Intracranial Hypotension

Written by Jennifer Huron on January 27, 2017
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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… Read More

Desiree Lyon Howe: 2016 Rare Impact Award Honoree

Written by Christina Jensen on May 11, 2016
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Desiree Lyon Howe lived for 10 years in excruciating pain before being diagnosed with Acute Intermittent Porphyria (AIP). She was finally diagnosed at the National Institutes of Health where what would become the first therapy approved as orphan drug, Panhematin®, saved her life.  Upon… Read More

Rare Disease Artists’ Work Traveling Globe to Raise Awareness

Written by Jennifer Huron on September 8, 2015
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cystinosisThe Cystinosis Research Network (CRN), a 501(c)(3) charitable organization and NORD member, created the first-ever “Dream, Achieve, Inspire” art exhibit prepared entirely by patients with cystinosis, a rare, genetic-metabolic disease. Paintings, poems, sculptures, dance, and photography from 107 individuals with cystinosis covering 30 countries came… Read More