Europe and USA rare disease advocacy groups reach across the Atlantic to form common alliance

Following in the footsteps of the FDA and the EMEA, a transatlantic alliance has now been forged to strengthen and share resources for rare disease patients. The European Organisation of Rare Diseases (EURORDIS ) and the USA’s National Organization of Rare Disorders (NORD) have signed a Memorandum of Understanding designed to coordinate and pool efforts and resources. The strategic partnership between the two groups will harmonise key advocacy priorities, allowing for the coordination of biopharmaceutical-related activities. In a press release, Peter L. Saltonstall, NORD President and CEO, commented that “Since patients with rare diseases may be located anywhere in the world, international collaboration to support and advance their needs is extremely important”. EURORDIS Chief Executive Officer Yann Le Cam concurred, observing that the two advocacy groups are well-positioned to “…help bridge the gap between those regions of the world that have progressed more than others in their strategies to address the needs of people living with rare diseases. We can be key facilitators to promote the common interest of people with rare diseases and to empower patient advocates all over the world." From Orpha News Oct 09 www.orpha.net