Synageva BioPharma Joins NORD, Eurordis and Global Genes Project in Support of Rare Disease Day 2013

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Synageva BioPharma Corp. (Synageva), a clinical stage biopharmaceutical company developing therapeutic products for rare diseases, joins the National Organization for Rare Disorders (NORD), the European Organisation for Rare Diseases (EURORDIS), the Global Genes Project, and others around the world in observing Rare Disease Day. On […]

FMD Chat Connects With RareConnect

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Those affected by fibromuscular dysplasia around the world now have a new option through which to interact with one another as the result of a partnerhship between FMD Chat and RareConnect. RareConnect was created by EURORDIS (European Rare Disease Organisation) and NORD (National Organization for […]

It’s a Wrap – World RARE Disease Day 2012 Success

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The 5th Annual World Rare Disease Day took place February 29, 2012, with a fanfare of activities worldwide!  Sponsoring organizations like NORD and Eurordis engaged in more activities and awareness efforts, garnering increased attention and engagement than previous years. Once again, the Global Genes Project™ […]

Wear That You Care Campaign Success at World Rare Disease Day 2011

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It’s a Wrap – Rare Disease Day 2011. DANA POINT, Calif. – The 4th Annual World Rare Disease Day took place February 28, 2011 with a fanfare of activities worldwide! Sponsoring organizations like NORD and Eurordis engaged in more activities and awareness efforts, garnering increased […]

Shire Supports World Rare Disease Day 2011 and Long Term Commitment to Rare Disease

Global Initiatives Underscore Company’s Long-term Commitment to the Rare Disease Community Lexington, Massachusetts, USA 28th February /PRNewswire/ — Shire plc (LSE: SHP, NASDAQ: SHPGY), the global specialty biopharmaceutical company, today announced its support of World Rare Disease Day, joining patients, healthcare providers, and patient organizations […]

The Road to Diagnosis: Stories from Patients with Rare Diseases

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In recognition of International Rare Disease Day 2011, Inspire has compiled first-person narratives in a new report, The Road to Diagnosis: Stories from Patients with Rare Diseases. The compilation, drawn from a selection of Inspire’s 170,000 members of its online patient support communities, is available […]

U.S. and European Rare Disease Organizations Sign Strategic Alliance

Danbury, CT—–The leading advocacy groups for Americans and Europeans with rare diseases—the National Organization for Rare Disorders (NORD) and the European Organization for Rare Diseases (EURORDIS)—have signed a Memorandum of Understanding to join forces on several key strategic initiatives on behalf of rare disease patients […]