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
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.