Genzyme Recognizes International Rare Disease Day with Second Annual Patient Advocacy Grant Program
Feb 29, 2012, 09:00 ET
TORONTO, Feb. 29, 2012 /CNW/ - Genzyme, a Sanofi company (EURONEXT: SAN and NYSE: SNY), today announced its support of International Rare Disease Day with a series of events to celebrate and recognize the global rare disease community. Observed annually on the last day of February, Rare Disease Day seeks to call attention to rare diseases as an important public health issue, and to bring widespread recognition of increased need for education, research and treatment.
As part of its rare disease day activities, Genzyme is pleased to announce the launch of its second annual global grant program, the Genzyme Patient Advocacy Leadership Awards (PAL Awards). Now open for submissions, the Genzyme PAL Awards support 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. Due to last year's overwhelming response, which included ideas and programs to improve disease awareness, patient education, care and support from around the world, Genzyme has doubled this year's grant amount for a total of $100,000. Grants will be awarded through a competitive application process to organizations that seek funding for new initiatives that support the LSD patient community.
"Partnerships such as the PAL Awards program underscore Genzyme's commitment to the rare disease community and demonstrate the importance of increased education and awareness of rare diseases to improve the quality of care of patients around the world," said Rogerio Vivaldi M.D., Genzyme's Head of Rare Diseases. "For over 30 years, Genzyme has been proud to work with patient organizations to further access to care and treatment for patients with rare and special unmet medical needs."
In 2011, more than 50 patient organizations around the world, including from Canada, responded to Genzyme's PAL Awards program, and 11 patient organizations were selected by the External Review Committee to win a PAL Award. Among those selected in 2011 was the National Gaucher Foundation of Canada.
"Our organization is proud to represent Canada as one of the groups selected from around the world to undertake our proposal for the "My Normal" Digital Storytelling Project for Kids," said Emma Rooney, Director and Secretary with the National Gaucher Foundation of Canada. "As a Gaucher patient, winning this award allows me to communicate my own childhood story digitally, for a global audience. PAL's emphasis on innovation allows us to take a creative approach to reducing the isolation that young patients and their families may feel through the sharing of stories."
Additional Genzyme Rare Disease Day Initiatives in Canada
February 29, 2012 marks the fifth International Rare Disease Day, involving numerous rare disease organizations from Canada and around the world. There are nearly 7,000 identified rare diseases and many have no treatment available. While each of these diseases is rare, collectively they affect millions of people.
"As an annual partner for International Rare Disease Day in Canada, Genzyme is extremely proud to continue our ongoing support of such dedicated organizations as the Canadian Organization for Rare Disorders, the Quebec Coalition of Orphan Diseases, and other LSD-specific groups," said Monty Keast, Business Unit Director at Genzyme Canada Inc. "We are pleased to continue our partnerships with these organizations, to assist in their efforts to improve the lives of the many Canadians who comprise this rare group, and to give them a voice."
More About Genzyme Patient Advocacy Leadership (PAL) Grant
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 15, 2012 and the award recipients will be announced by September 30, 2012. 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.
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