Alexion Joins Patient Organizations Worldwide in Support of International Rare Disease Day 2015
February 27 2015 - 6:30AM
Business Wire
Company will participate in events across the
globe to raise awareness of the need for improved diagnosis and
treatment for patients with rare diseases
Alexion Pharmaceuticals, Inc. (Nasdaq:ALXN) joins the European
Organization for Rare Diseases (EURORDIS), the National
Organization for Rare Disorders (NORD) and rare disease patient and
healthcare advocates around the world in recognizing and supporting
Rare Disease Day 2015. Rare Disease Day, celebrated annually on the
last day of February, is dedicated to elevating public
understanding of rare diseases and calling attention to the special
challenges faced by patients and the community, including the need
for improved diagnosis and treatment.
The theme of this year’s Rare Disease Day, “Living with a Rare
Disease,” focuses on the daily lives of the patients, families and
caregivers who are impacted by rare diseases and pays tribute to
the millions of family members and friends who are living
“day-by-day, hand-in-hand” with rare disease patients. Alexion
supports these key objectives of EURORDIS and NORD every day
through its mission to develop and deliver life-transforming
therapies for patients worldwide who live with severe and
life-threatening rare diseases.
“On this eighth annual Rare Disease Day, and every day, we pay
tribute to patients and families living with rare diseases, as we
recognize the challenges they continue to face, including receiving
an accurate and timely diagnosis and accessing effective treatment
options,” said Leonard Bell, M.D., Chairman and Chief Executive
Officer of Alexion. “At Alexion, our deep commitment to patients,
families and caregivers drives us to work harder every day to
overcome these obstacles through disease education efforts and by
partnering with governments worldwide to ensure patients have
access to life-transforming therapies.”
As a part of its support for Rare Disease Day, Alexion is
engaging in a range of initiatives spanning across North America,
Europe, Latin America, Asia and Australia to raise awareness of
rare diseases, elevate rare diseases as an important public health
issue and highlight the impact of rare diseases on patients and
their loved ones’ lives. These activities include educational
efforts involving policymakers and medical professionals,
partnerships with local organizations and participation in local
Rare Disease Day-related events.
North America
- Alexion is a sponsor and participant in
the Rare Disease Legislative Advocates (RDLA) 4th Annual Rare
Disease Week on Capitol Hill in Washington, D.C. and will also
participate in briefing legislators on rare diseases in multiple
states.
- Alexion employees will address the
various aspects of improving patient outcomes and orphan drug
development through participation in several symposia and panel
forums taking place in settings that include the Massachusetts
Biotechnology Council, the Canadian Rare Disease Day Conference,
the Massachusetts State House, the University of Connecticut School
of Pharmacy, the University of Utah, and a Google “Hang Out.”
- Alexion is a Silver Sponsor of the Rare
Disease United Foundation’s “Beyond the Diagnosis” Art Exhibit at
the Brown University Alpert Medical School in Providence, RI
(through the end of February).
- Connecticut-based employees will host a
session for students about rare diseases at the Celentano Biotech,
Health and Medical Magnet School (K-8) in New Haven.
- Alexion is a corporate sponsor and the
2015 Rare Disease Leadership Award recipient at the Canadian
Organization for Rare Disorders (CORD) Rarity Awards Dinner Gala
(March 5).
- Alexion is a Gold Sponsor of the Utah
World Rare Disease Day Statehouse Event at the Utah State Capitol
Building Rotunda (Feb. 27, 3-5 p.m.).
Europe
- Alexion is participating in
parliamentary events from Belgium to Sweden that include a EURORDIS
policy briefing on rare disease for EU policymakers.
- Alexion is a sponsor of the EURORDIS
Annual Fund Raising Gala Dinner in Brussels, Belgium
- In France, Alexion is supporting a
local walk to raise funds for local patient organizations.
- In Finland, Alexion is supporting the
production of a Rare Disease Day supplement in Helsingin Sanomat,
the largest subscription newspaper in Finland and the Nordic
countries, in order to increase awareness of rare diseases.
- In Russia, Alexion is supporting the
Congress on Rare Diseases, led by rare disease patient
organizations, the National Association of Patients with Rare
Diseases '"GENETICA," and the Russian Association of Rare Diseases.
This is the first rare disease congress with participation of
almost all of Russia’s patient organizations. Additionally, Alexion
is supporting the Annual National Award “Blue Bird,” which
recognizes individuals who have made a significant contribution to
the care of patients with rare diseases.
Latin America
- In Argentina, Alexion is sponsoring the
Federación Argentina de Enfermedades Poco Frecuentes (FADEPOF)
local events and social "Connectivity and Union" campaign to
address the needs of patients with rare diseases.
- Alexion is sponsoring the Federación
Colombiana de Enfermedades Raras (FECOER) legislative events in
Colombia to commemorate the fifth anniversary of the approval of
the Colombian Rare Disease Law and empower advocates to take action
for those affected by rare diseases.
- Alexion is sponsoring the Organización
Mexicana de Enfermedades Raras (OMER) Rare Disease Day Summit in
Guadalajara, Mexico which will feature a series of workshops,
exhibits and informative sessions about rare diseases.
Australia
- Alexion is supporting Rare Voices
Australia as a sponsor of the Rare Disease Summit in Melbourne,
which aims to drive collaboration among stakeholders to address the
common needs and concerns of people living with a rare
disease.
In addition to these global initiatives to support the rare
disease community, scientists at Alexion are working to understand
the underlying causes of rare diseases and to discover and develop
breakthrough medicines to treat them. Alexion’s development
programs include several highly innovative therapeutic candidates,
which are being investigated in severe and rare disorders across
the areas of hematology, nephrology, transplant, neurology,
metabolic disorders and inflammatory disorders. To learn more about
Alexion’s Research & Development programs, visit
www.alexion.com/pipeline.
For more information about Rare Disease Day in the U.S., go to
www.rarediseaseday.us, and for information about global Rare
Disease Day activities, go to www.rarediseaseday.org.
About Rare and Ultra-Rare Disorders
In the United States, a disease is defined as rare if it affects
fewer than 650 patients per million of population.1 The European
Union definition of a rare disease is one that affects fewer than
five patients per 10,000 of population.2 In contrast, a disease is
generally considered to be ultra-rare if it affects fewer than 20
patients per million of population3 (one patient per 50,000) – and
most ultra-rare diseases affect far fewer people than this.
Despite the very small numbers of patients they affect, the
impact of these rare and ultra-rare diseases on patients, their
families, and society is profound, as many of these conditions are
severe, chronic and progressive, with significant premature
mortality. Patients with severe and life-threatening ultra-rare
diseases often live without hope, have no effective treatment
options and may face premature death.
About Alexion
Alexion is a biopharmaceutical company focused on serving
patients with severe and rare disorders through the innovation,
development and commercialization of life-transforming therapeutic
products. Alexion is the global leader in complement inhibition and
has developed and markets a treatment for patients with paroxysmal
nocturnal hemoglobinuria (PNH) and atypical hemolytic uremic
syndrome (aHUS), two debilitating, ultra-rare and life-threatening
disorders caused by chronic uncontrolled complement activation.
This press release and further information about Alexion can be
found at: www.alexion.com.
[ALXN-G]
References:
1. U.S. Food and Drug Administration. Definition of Disease
Prevalence for Therapies Qualifying Under Orphan Drug Act:
http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm135130.htm
2. REGULATION (EC) No 141/2000 OF THE EUROPEAN PARLIAMENT AND OF
THE COUNCIL of 16 December 1999 on orphan medicinal products.
http://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:32000R0141&qid=1421232987002&from=EN
3. REGULATION (EU) No 536/2014 OF THE EUROPEAN PARLIAMENT AND OF
THE COUNCIL of 16 April 2014 on clinical trials on medicinal
products for human use, and repealing Directive 2001/20/EC.
http://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:32014R0536&qid=1421232837997&from=EN
Alexion Contacts:MediaIrving Adler, 203-271-8210Executive
Director, Corporate CommunicationsorKim Diamond, 203-439-9600Senior
Director, Corporate CommunicationsorInvestorsElena Ridloff, CFA,
203-699-7722Executive Director, Investor Relations
Alexion Pharmaceuticals (NASDAQ:ALXN)
Historical Stock Chart
From Mar 2024 to Apr 2024
Alexion Pharmaceuticals (NASDAQ:ALXN)
Historical Stock Chart
From Apr 2023 to Apr 2024