CAMBRIDGE, Mass., Aug 17, 2011 (BUSINESS WIRE) — Genzyme, a Sanofi company, 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.
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:
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-a-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.
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 .