Program recognizes and supports patient communities working to expand awareness of rare diseases around the world
CAMBRIDGE, Mass.--(BUSINESS WIRE)-- 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: www.genzymeadvocacyawards.com.
Genzyme is pleased to announce the 2012 PAL Award grant recipients below:
Chile: Fundación de Pacientes Lisosomales de Chile (FELCH)
“Power to the Patients: LSD Patient Education Campaign”
FELCH will conduct an education campaign designed to improve disease knowledge and management by the patient and medical communities. A key component of the program involves physician-led workshops to reduce discrimination of patients with LSDs and increase the level of commitment by the medical community to improve overall care. In addition, government representatives will lead a workshop for patients and physicians to help increase knowledge around patient’s rights, the role of patient organizations and patient advocacy.
France: Association Pour la Maladie de Fabry (APMF)
“Fabry Families: No Patients Forgotten”
APMF will improve the diagnosis of Fabry disease and optimize family screening programs through a multi-media patient education and training program. APMF will work with patients to create and distribute educational materials about the inheritance pattern of the disease and ways of managing the psychological burden of having to inform family members who may be at risk. The campaign will also include workshops led by psychologists and patient testimonial videos to help patients and their families cope with the diagnosis of this genetic disease. At the end of the 18-month period, APMF will conduct a follow up survey to assess the impact of the campaign in hopes to increase family screening for Fabry disease.
Poland: A joint project of The National Forum for the Treatment of Rare Diseases and the Polish Association for Families Affected by Fabry
“Where is Fabry?” Campaign
This PAL-funded project seeks to improve public awareness and understanding of Fabry disease through a unique campaign called, “Where is Fabry?” for Warsaw city residents. Using Facebook and other tools such as large banners posted throughout Warsaw, they will encourage residents to “find” Fabry in their city. Clues will lead residents to an igloo in the city center, which will serve to highlight one particular symptom of the disease – difficulty in withstanding heat. A press conference will be held near the igloo once Fabry is “found.” The search for Fabry will be followed by a video and media campaign.
United Kingdom: Niemann-Pick Disease Group UK (NPDG-UK)
“Teenagers and Young Adults with Niemann-Pick Disease: Facing the Future Together”
This project seeks to empower and improve the lives of teenagers and young adults with Niemann-Pick disease through education, information, and community. The NPDG-UK will host its first-ever meeting solely for teenagers and young adults, so they can meet and interact with peers and share personal stories of living with the disease. The NPDG-UK will create a dedicated on-line forum to encourage on-going peer-to-peer communication and establish an international exchange program to enable one teenage representative to travel to the next meeting of the International Niemann-Pick Disease Alliance.
United Kingdom: UK Gauchers Association
“Empowering Young Type III GD Patients to Shape the Future”
To pilot a two-year education program to educate and empower adolescent girls with Gaucher Type III to become advocates and future leaders of the Gaucher community. The project will include education and training on topics such as research, the role of patient organizations, public speaking, and advocacy. Participants will gain the skills necessary to become ambassadors of the Gaucher community, ultimately serving as UK Gauchers Association board members.
Hong Kong: Hong Kong MPS & Rare Genetic Diseases Mutual Group (HKMPS)
“Knowing MPS with Comics”
The HKMPS group will sponsor an art competition for university and high school students who will create comic books based on the real lives of MPS patients in the region. Original art work will be based on individual stories found in previously published works by HKMPS. As a popular medium among Hong Kong readers, the use of comics will increase awareness of the disease among new populations who have little or no exposure to rare disorders like MPS. The winners of the competition will have their works published in booklets, which will then be available for sale.
Macedonia: The Macedonia Life with Challenges
“Don’t Cry, Fight for Your Rights”
Because no information exists in the Macedonian language about rare diseases, or Gaucher disease in particular, The Life with Challenges group will sponsor a public education campaign. Their campaign will include the translation of educational materials from other countries into Macedonian and the development of a magazine/newsletter to be distributed to patients, physicians and the media. The campaign will also include a press conference and other media outreach activities to increase support for the rights of people with rare diseases among policy makers.
Thailand: The Genetic LSD Foundation
“Establishment of LSD’s Patients Network in Thailand”
The Genetic LSD Foundation seeks to strengthen the LSD community in Thailand through an outreach program focused on rural, underserved areas of the country. They will create four regional networks to help facilitate communication and education between patients, their physicians, and the Foundation. The Foundation will conduct their first-ever meeting in each region to introduce patients and physicians to the Foundation, to educate them about patient’s rights and to support continued communication and networking among all participants.
United States: The Little Miss Hannah Foundation
“World Rare Disease Day 2013”
The Little Miss Hannah Foundation seeks to educate and raise awareness among school children about rare diseases. Working in collaboration with the Global Genes project (R.A.R.E.) to recognize Rare Disease Day 2013, the Foundation will teach elementary school children in three Nevada schools about LSDs. The project also seeks to raise awareness among adults by providing students with take-home materials, as well as to promote compassion by enabling each child to write a postcard to the family of a child living with a lysosomal storage disorder.
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, a global and diversified 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).
Lori Gorski, 617-768-9344