Rare Disease Day 2010: Alexion Pharmaceuticals joins NORD and EURORDIS to raise awareness

Alexion Pharmaceuticals, Inc., (Nasdaq: ALXN) has joined the National Organization for Rare Disorders (NORD) and the European Organization for Rare Diseases (EURORDIS) in supporting the goals of the third annual Rare Disease Day, February 28, 2010.

“To reduce the risk of infection, all patients must be vaccinated at least 2 weeks prior to receiving the first dose of Soliris and must be revaccinated according to current medical guidelines for vaccine use.”

Rare Disease Day, established by EURORDIS in 2008, seeks to increase the visibility of rare diseases, give hope and information to patients, coordinate policy actions in different countries, and ensure equal access to quality care and treatment. More information on Rare Disease Day is available at www.rarediseaseday.org.

"Rare Disease Day enables the rare disease community to raise awareness about the clinical needs and personal struggles faced by these patients and families. Our goal is to highlight the importance of ongoing therapeutic breakthroughs and explain the need to facilitate access to medicines once they become available,” said Peter Saltonstall, President of NORD.

This year’s Rare Disease Day theme, “Bridging Patients and Researchers,” highlights the importance of collaboration between the clinical, advocacy, and patient communities for the discovery and development of rare disease treatments. Activities held worldwide marking this year’s Rare Disease Day include educational events, podcasts and social networking to help patients around the world to share their struggles, stories and hopes for future treatments.

“The theme of this year’s Rare Disease Day is especially meaningful to Alexion,” said Leonard Bell, M.D., Chief Executive Officer of Alexion. “Through our focus on developing and delivering treatments for patients with ultra-rare disorders, we know first-hand the possibilities for transforming patients’ lives through medical innovation. We are continuing to bring Soliris to patients with PNH around the world while developing treatments for patients with other ultra-rare, debilitating and life-threatening disorders.”

Alexion is the developer of Soliris® (eculizumab), the first treatment approved in the U.S., European Union and other countries as a treatment for all patients with paroxysmal nocturnal hemoglobinuria (PNH), a severe, debilitating and life-threatening blood disorder defined by hemolysis (red blood cell destruction). Among other research programs, Alexion is currently investigating the potential of Soliris as a treatment for patients with atypical Hemolytic Uremic Syndrome (aHUS), an ultra-rare and life-threatening genetic disorder, and acute humoral rejection in kidney transplant patients. The Company is recognizing Rare Disease Day with events at its international facilities.

Information about NORD can be found at www.rarediseases.org, and information about Rare Disease Day activities in the U.S. are available at www.rarediseaseday.us.

SOURCE Alexion Pharmaceuticals, Inc.


The opinions expressed here are the views of the writer and do not necessarily reflect the views and opinions of News Medical.
You might also like... ×
New methodology predicts biological activity of any molecule