Synageva BioPharma Joins NORD, Eurordis and Global Genes Project in Support of Rare Disease Day 2013
March 1, 2013
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 the last day of February each year, patient organizations, industry and other participants conduct special events to raise awareness and advance policies to improve conditions for people living with rare diseases. The theme of this year’s Rare Disease Day, “Rare Disorders without Borders,” conveys the global solidarity of the rare disease community which shares many of the same medical, social and economic challenges.
“There are nearly 30 million Americans—and millions more around the world—affected by rare diseases,” said Peter L. Saltonstall, President and CEO of NORD. “Everyone knows someone with a rare disease. But, while many of these diseases are serious and lifelong, most have no treatment and many are not even being studied by researchers.”
Synageva is proud to join efforts during this year’s Rare Disease Day with The Global Genes Project, a leading non-profit organization for rare and genetic diseases. Along with displaying the signature Blue Denim Genes Ribbon™ associated with The Global Genes Project, Synageva employees will participate in a volunteer fundraiser with proceeds to benefit the Support Organization for Lysosomal Acid Lipase Deficiency Advocacy, Care and Expertise (LAL Solace), a patient advocacy group for individuals affected by lysosomal acid lipase deficiency (LAL Deficiency).
“We are profoundly aware of the challenges facing patients and their families who suffer from rare diseases,” said Sanj K. Patel, President and CEO of Synageva. “We are deeply driven and motivated to help these often overlooked and underserved individuals and are focused on making a meaningful impact on their lives. We applaud the efforts of NORD, EURORDIS, The Global Genes Project, LAL Solace and others to help raise awareness of rare diseases around the world.”
Synageva is a clinical stage biopharmaceutical company focused on the discovery, development and commercialization of therapeutic products for patients with life-threatening rare diseases and unmet medical need. Synageva has several protein therapeutics in its drug development pipeline. The company has a team with a proven record of bringing therapies to patients with rare diseases.
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