|[February 28, 2014]
Genzyme Recognizes International Rare Disease Day with Global Awareness Programs and Launch of Fourth Annual Patient Advocacy Leadership (PAL) Awards
CAMBRIDGE, Mass. --(Business Wire)--
a Sanofi company (EURONEXT: SAN and NYSE: SNY), 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
February 28, 2014 marks the seventh International Rare Disease Day. This
year's theme, "Care: Join Together for Better Care," emphasizes that the
many different facets of rare disease care represent a universal need
for patients and their families around the world. Advocating at the
local and national level to improve the lives of people living with a
rare disease and their families is necessary.
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. These initiatives include:
Genzyme is sponsoring a Rare Disease Day running/walking relay which
connects 12 Genzyme sites around the world.
Genzyme is participating in parliamentary events from Australia to the
UK, and is sponsoring and participating on the "Science Behind Rare
Diseases" panel discussion at the Rare Disease Caucus Briefing in
In Naarden, over 50 employees join together for the "Express that you
care" workshop creating 3 colourful paintings - one of the paintings
will move to the new building of the Dutch Association for Children
and Parents with Metabolic Diseases (VKS).
Genzyme is the primary sponsor of Japan's main Rare Disease Day event,
held at Tokyo Station. The event includes a panel exhibition, speeches
about rare diseases from patients and students, and a library of rare
disease themed books.
Genzyme is partnering with the Italian Rare Disease Patient Movement
and the Italian Glicogenosis Association to showcase photos of people
living with rare diseases in the Fotograf-Rare exhibition.
In São Paulo, Brazil, Genzyme employees join patients and other
supporters for a Rare Diseases Street Walk between Mario Covas Park
and Trianon Park.
In Spain, Genzyme is working with the Federation for Rare Diseases
(FEDER) to teach schoolchildren about the daily realities faced by
their classmaes living with rare diseases through an ongoing program
called "Take a Rare Challenge."
Genzyme is working with the Philippine Society for Orphan Disorders,
Inc. (PSOD) to hold a Household Business Forum teaching caregivers of
rare disease patients how they can earn a living while staying home to
care for their family member.
In Germany, healthcare policies related to this year's theme "caring"
will be discussed with an interdisciplinary "expert talk round"
and with journalists.
Genzyme is partnering with the Hong Kong Alliance of Patients'
Organizations (HKAPO), the Hong Kong Mucopolysaccharidoses and Rare
Genetic Diseases Mutual Aid Group (HKMPS), and various stakeholders to
organize a roundtable on rare disease policy development. HKAPO will
use the output of the meeting to develop a white paper report on rare
disease policy in Hong Kong.
In France, Genzyme has joined forces with the patient association
Alliance Maladies Rares to explain rare diseases to children by
creating a partnership with the newspaper "Mon Petit Quotidien." The
proposed program is developed for French schools.
To find out more about Genzyme's global Rare Disease Day activities
around the world, please visit http://raredisease.genzyme.com/.
In addition, Genzyme is pleased to announce the launch of the fourth
annual Patient Advocacy Leadership Awards (PAL 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 and support, and education.
In 2013, more than 40 patient organizations representing 25 countries
submitted proposals. Eight recipients were chosen by an external review
committee and collectively received over $100,000 from Genzyme, to
support programs in Chile, China, Denmark, Hungary, the Philippines, the
United Kingdom and the United States.
The National Tay-Sachs and Allied Diseases Association (NTSAD) in the
United States was a recipient of a 2013 PAL Award for its proposal to
create a video series designed to support siblings of children affected
with life limiting illness, as well as those living with complex and
"We are genuinely grateful to Genzyme for this opportunity to further
cultivate and foster a strong sibling community which will also give
parents and providers a deeper understanding of the sibling experience,"
said Kimberly Kubilus, Director of Family Services, NTSAD, 2011 and 2013
PAL Award Recipient.
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 and patient care, support and
communication networks. This grant program is supplemental to Genzyme's
existing grants program and will not replace the contributions made
locally each year to support advocacy groups. Proposals will be reviewed
by an external review committee. Applications must be received by June
6, 2014 and the award recipients will be announced by September 30,
2014. 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.
Sanofi, an integrated global 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 (NYSE: SNY).
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