Company will participate in events across the globe to raise
awareness of the need for improved diagnosis and treatment for patients
with rare diseases
Company Website:
http://www.alexionpharma.com
CHESHIRE, Conn. -- (Business Wire)
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
Contacts:
Alexion Contacts:
Media
Irving Adler, 203-271-8210
Executive
Director, Corporate Communications
or
Kim Diamond, 203-439-9600
Senior
Director, Corporate Communications
or
Investors
Elena
Ridloff, CFA, 203-699-7722
Executive Director, Investor Relations
Source: Alexion Pharmaceuticals, Inc.
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