Synageva BioPharma Corp. (Synageva) (NASDAQ:GEVA), 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, or slogan, this year for Rare Disease Day is “Rare Disorders Without Borders” to help convey the global solidarity of the rare disease community which shares many of the same medical, social and economic challenges. In the U.S., this year’s Rare Disease Day also coincides with the 30th anniversary of the Orphan Drug Act, which provides incentives to encourage companies to develop treatments for rare diseases, and of the founding of NORD, which was established by patient advocates in 1983.
“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.”
“More than half of the people who have rare diseases are children,” Saltonstall said. “Challenges faced by patients and their families include delayed diagnosis, few treatment options, and difficulty finding medical experts. Many rare diseases have no approved treatment.”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 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).