CAMBRIDGE, Mass.--(BUSINESS WIRE)--Genzyme,
a Sanofi company (EURONEXT: SAN and NYSE: SNY), today announced the
first recipients of the Genzyme Patient Advocacy Leadership (PAL)
Awards. This global grant program supports non-profit organizations that
work on behalf of patients living with lysosomal storage disorders
(LSDs), a group of rare, inherited disorders that cause progressive and
debilitating health problems.
“We are inspired by the broad range of activities that were proposed
through the program, from training and communication initiatives,
disease awareness events, and patient meetings in countries that have
never had patients gather together before”
The Genzyme PAL Award program was launched earlier this year to
encourage new and innovative approaches to improve disease awareness,
patient care support, and education. More than 50 patient organizations
representing 25 countries submitted proposals. Eleven recipients were
chosen and received nearly $100,000 from Genzyme, approximately double
the amount previously planned to support the PAL Award program. Because
of the overwhelming response from patient organizations globally, the
company now expects to make the PAL Awards an annual or bi-annual
initiative. The Genzyme PAL Award program supplements Genzyme’s existing
grants program and does not replace the contributions made locally each
year to support advocacy groups.
“We are inspired by the broad range of activities that were proposed
through the program, from training and communication initiatives,
disease awareness events, and patient meetings in countries that have
never had patients gather together before,” said Genzyme’s Senior
Director of Global Patient Advocacy, Jamie Manganello Ring. “The
response to this inaugural program clearly demonstrates the many needs
that exist within the LSD community, and underscores one of the ways
companies like Genzyme can help.”
An external review committee was assembled to review and select PAL
Award recipients. The committee members included: Melodie Jackson,
Associate Dean for Communications and Public Affairs at Harvard
University’s Kennedy School of Government; Patricia Collins, Chief
Development Officer at Clinton Health Access Initiative; Jean F.
Campbell, Rare Disease Advocacy Consultant; Dr. Adriana Linares
Ballesteros, Pediatric Hematologist/Oncologist and Gaucher disease
expert; and Cara Hesse, Associate Director of Global Patient Advocacy at
Genzyme. More information on the Genzyme PAL Awards can be found at: www.genzymeadvocacyawards.com.
Genzyme is pleased to announce the 2011 PAL Award grant recipients below:
Innovation Grants
Fabry Support and Information Group of the Netherlands -- Netherlands
The "Fabry International Female Day (FIFI)" – to launch and promote an
annual, international Fabry Female Day to raise awareness about the
effects of the disease in women. The project will also seek to increase
knowledge of disease progression in women through the development and
analysis of an international survey of Fabry women.
Colombian Patient Association of Lysosomal Disorders (ACOPEL) --
Colombia
The "Productive Keepers Program" – to provide job training and resources
to "Keepers" (also known as caregivers) who have had to leave their jobs
and forfeit necessary household income in order to care for a loved one
suffering from a lysosomal storage disorder. The program will enable
participants to continue their caregiver responsibilities while
developing new job skills.
Italian Niemann Pick Foundation -- Italy
The "Diagnostic Ombudsmen Program" – to develop a training course for
physicians, enabling them to improve their ability to support families
dealing with and navigating complex diagnoses associated with rare
diseases. The course is intended for physicians working in the public
health system who have experience working with local authorities and in
social services.
National Association of Gaucher Patients -- Bulgaria
The "Patient Representative Training Program" – to develop and implement
a 3-day training program for patient representatives designed to educate
participants about Bulgaria’s healthcare system, media relations,
awareness campaigns, the legislative environment, and patient rights
vis-à-vis the pending integration of Bulgarian and European health care
systems.
Association of Family Members & MPS Carriers of Sao Paolo State --
Brazil
The "MPS Disease Awareness Campaign" – to support a campaign to raise
awareness of MPS within Brazilian society through various media outlets,
utilizing celebrity support and new printed materials that describe the
effects of MPS.
National Tay-Sachs and Allied Diseases Association -- U.S.
The "Philosophy of Care" Video – to support the production and
distribution of a unique video resource and guide to help newly
diagnosed families understand the spectrum of care options, situate
their own goals for their children and develop their philosophy of care.
National Gaucher Foundation of Canada -- Canada
The "My Normal" Digital Storytelling Project for Kids – to transform a
speech given by a Gaucher patient about her experiences growing up with
Gaucher disease prior to the availability of enzyme replacement therapy.
The digital format will combine recorded voice, simple text, photos and
original artwork to inspire children with Gaucher and other rare
diseases.
International Society For Mannosidosis and Related Diseases (ISMRD)
-- U.S.
The "Management Guidelines" project – to develop and publish a
first-ever medical paper that sets forth disease management guidelines
for complex symptoms of Mucolipidosis II and Mucolipidosis III.
Empowerment Grants
MarbleRoad -- U.S.
The "Rare Children’s Storybook Contest" project – to sponsor an online
contest within the rare disease community for age-appropriate stories
reflecting the perspective of self, sibling, caregiver, or other
relevant role in the illness experience, and to help facilitate dialogue
and understanding for families facing complex illness.
Rare Disorders Society of Singapore
The "Children’s Piano Charity Concert" – to support a piano concert at a
women’s and children’s hospital that raises funds for those diagnosed
with an LSD, and to create an internet portal that increases awareness
of LSDs within Singapore.
Lysosomal Storage Disorders Support Society (LSDSS) -- India
The "Continuing Medical Education Program" project – to help provide
medical professionals in 4 locations in India with proper information
regarding LSDs with the aim of increasing more accurate diagnoses.
About Genzyme, a Sanofi Company
One of the world's leading biotechnology companies, Genzyme is dedicated
to making a major positive impact on the lives of people with serious
diseases. Since its founding in 1981, the company has introduced
breakthrough treatments that have provided new hope for patients. The
company’s areas of focus are rare genetic diseases, multiple sclerosis,
cardiovascular disease, and endocrinology. Genzyme is a Sanofi company.
Genzyme’s press releases and other company information are available at www.genzyme.com.