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Genzyme, a Sanofi company (EURONEXT: SAN and NYSE: SNY), today announced the recipients of the Genzyme Patient Advocacy Leadership (PAL) Awards. This global grant program supports outreach programs by 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.
In its second year, the Genzyme PAL Award program encourages new and innovative approaches to improve disease awareness, patient care support, and education. More than 50 patient organizations representing 27 countries submitted proposals. Nine recipients were chosen and received over $100,000 from Genzyme, to support programs in Chile, France, Hong Kong, Macedonia, Poland, Thailand, the United Kingdom and the United States. Proposals were received from the Gaucher, MPS, Fabry, Pompe, and Niemann-Pick disease communities as well as several other rare disease patient organizations. 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.
“Raising awareness and supporting rare disease communities with such small patient numbers can be incredibly challenging, and requires creativity and commitment to move programs forward. This year the PAL Awards recognize many organizations around the world that are planning exciting efforts to raise awareness using the internet, family education, collaboration with healthcare providers, and in one case even using an igloo to draw public attention,” said Genzyme’s Head of Rare Diseases, Rogerio Vivaldi, M.D. “With over half of this year’s applications coming from organizations that had not applied previously for a Genzyme PAL award, we recognize that many worthwhile organizations need support to help them fulfill their missions. The PAL program can help to empower these patient groups in their important work.” Earlier this year, Genzyme also launched a blog devoted to patient advocacy activities called
www.genzymerarecommunity.com. This blog is intended to connect various patient organizations together, building bridges across different disease communities to exchange ideas and to connect communities together.
An external review committee was assembled to review and select PAL Award recipients. The committee members included: Patricia Collins, former Chief Development Officer at Clinton Health Access Initiative; Jean F. Campbell, Rare Disease Advocacy Consultant; Erik Tambuyzer, President and Founder, ABConsult; 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:
Genzyme is pleased to announce the 2012 PAL Award grant recipients below: