TORONTO, Feb. 27, 2013 /CNW/ - Genzyme, a Sanofi company, today announced its support of International Rare
Disease Day with a series of initiatives meant to call attention to
rare diseases as an important public health issue and to improve rare
disease education, research, and treatment. Observed annually on the
last day of February, Rare Disease Day is an international awareness
campaign organized by the patient organization EURORDIS and supported
by hundreds of other patient organizations around the world.
February 28, 2013 marks the sixth International Rare Disease Day. This
year's theme, "Rare Disorders without Borders," emphasizes that
international cooperation is essential for fighting diseases that
affect only a few people in each country and for which expertise is
scarce and scattered. In celebration of this theme, Genzyme is pleased
to launch a new website highlighting collaborative activities taking
place globally to recognize Rare Disease Day: http://raredisease.genzyme.com.
Genzyme sites around the world are partnering with local patient
organizations on a variety of Rare Disease Day activities meant to
educate policymakers, medical professionals, patients and caregivers,
and the general public and empower them to advocate for those affected
by rare diseases. A Canadian initiative, among many other global
Launch of "Facing Fabry Together," a film that tells the stories of
families from France, Germany, Brazil, and Canada living with Fabry
disease. The featured Canadian family live on the eastern edge of Nova
Scotia. The mother's father and one of her two sons were diagnosed with
Fabry disease in 2000. At the time, the mother was identified only as a
carrier. In 2004, her increasing symptoms led to genetic testing,
revealing what she and her husband had suspected. She was more than
"just a carrier." Visit www.facingfabrytogether.com to watch the film online.
Annual Patient Advocacy Leadership (PAL) Awards
Additionally, Genzyme is pleased to announce the launch of the third
annual Patient Advocacy Leadership Awards, a global grant program
supporting non-profit patient organizations that work on behalf of
individuals living with lysosomal storage disorders (LSDs), a group of
rare, inherited disorders that cause progressive and debilitating
health problems. Grants are awarded through a competitive process to
organizations that seek funding for innovative programs and projects
that improve disease awareness, patient care, support, and education.
In 2012, more than 50 patient organizations representing 27 countries
submitted proposals, and nine winners chosen by an external review
committee received a total of $100,000 from Genzyme.
Saluting Canada's New Orphan Drug Policy
Genzyme commends the Federal Government for implementing the new Orphan
Drug Policy, the first ever Canadian framework to increase access to
new treatments and information for rare diseases. The Canadian
Organization for Rare Disorders (CORD) needs to also be applauded for
their persistency and tireless efforts in helping the Federal
Government build this remarkable infrastructure that will benefit all
Canadians who live with rare diseases. This highly anticipated
regulatory framework is a major step forward, opening the way for
research and development of new drugs for "orphan" indications and
improving access to existing therapies.
The Orphan Drug Policy also opens the way for a Canadian Plan for Rare
Diseases, including guidelines for newborn screening, diagnosis, and
the creation of Centres of Reference.
"Canada's new orphan drug policy is a long overdue public commitment and
Genzyme Canada commends the Federal Government for moving the rare
diseases agenda forward to ensure our country is aligned with other
global jurisdictions," says Peter Brenders, General Manager, Genzyme
Canada. "And CORD is to be congratulated for its tireless dedication
and determination in advocating for rare diseases over the years and
pushing to make this policy a reality for this vulnerable and often
forgotten patient population."
More About Genzyme Patient Advocacy Leadership (PAL) Awards
Organizations may apply for a Genzyme PAL Award for programs that
support lysosomal storage disorder awareness, advocacy on behalf of
patient communities, patient education, patient care, support and
communication networks. This grant program is supplemental to Genzyme's
existing grants program and will not replace annual local support for
advocacy groups. Proposals will be reviewed by an external review
committee. Applications must be received by June 7, 2013 and the award
recipients will be announced by September 30, 2013. For more
information on the Genzyme PAL Awards program, or to apply for a grant,
please visit www.genzymeadvocacyawards.com.
About Genzyme, a Sanofi Company
Genzyme has pioneered the development and delivery of transformative
therapies for patients affected by rare and debilitating diseases for
over 30 years. We accomplish our goals through world-class research and
with the compassion and commitment of our employees. With a focus on
rare diseases and multiple sclerosis, we are dedicated to making a
positive impact on the lives of the patients and families we serve.
That goal guides and inspires us every day. Genzyme's portfolio of
transformative therapies, which are marketed in countries around the
world, represents groundbreaking and life-saving advances in medicine.
As a Sanofi company, Genzyme benefits from the reach and resources of
one of the world's largest pharmaceutical companies, with a shared
commitment to improving the lives of patients. Learn more at www.genzyme.com.
Genzyme® is a registered trademark of Genzyme Corporation. All rights reserved.
Sanofi, a global and diversified healthcare leader, discovers, develops
and distributes therapeutic solutions focused on patients' needs.
Sanofi has core strengths in the field of healthcare with seven growth
platforms: diabetes solutions, human vaccines, innovative drugs,
consumer healthcare, emerging markets, animal health and the new
Genzyme. Sanofi is listed in Paris (EURONEXT: SAN) and in New York
For further information: