Synageva BioPharma Corp.
(Synageva) (NASDAQ:GEVA), a 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, or slogan, this year for Rare Disease Day is “Join Together for Better Care” to help convey the global solidarity of the rare disease community which shares many of the same medical, social and economic challenges.
"Rare Disease Day is a time to focus on the 30 million Americans living with rare diseases and issues such as the need for more research and greater access to care," said Peter L. Saltonstall, NORD President and CEO. "The theme for 2014 is Join Together for Better Care, and we are emphasizing the importance of collaboration in addressing the needs of those affected by these diseases, which tend to be serious and complex."
Synageva is also proud to join efforts this year 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 fund-raiser 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).
In the U.S., a rare disease is one that affects fewer than 200,000 Americans, and in Europe, less than one in 2,000 citizens. According to EURORDIS, approximately 80% of rare diseases have a genetic origin.