Genzyme Recognizes International Rare Disease Day with the launch of a new website and the Third Annual Patient Advocacy
Genzyme Recognizes International Rare Disease Day with the launch of a new website and the Third Annual Patient Advocacy Leadership Awards
TORONTO, Feb. 27, 2013 /CNW/ - Genzyme, a Sanofi company, today announced its support of International Rare Disease Day with a series of initiatives meant to call attention to rare diseases as an important public health issue and to improve rare disease education, research, and treatment. Observed annually on the last day of February, Rare Disease Day is an international awareness campaign organized by the patient organization EURORDIS and supported by hundreds of other patient organizations around the world.
February 28, 2013 marks the sixth International Rare Disease Day. This year's theme, "Rare Disorders without Borders," emphasizes that international cooperation is essential for fighting diseases that affect only a few people in each country and for which expertise is scarce and scattered. In celebration of this theme, Genzyme is pleased to launch a new website highlighting collaborative activities taking place globally to recognize Rare Disease Day: http://raredisease.genzyme.com.
Genzyme sites around the world are partnering with local patient organizations on a variety of Rare Disease Day activities meant to educate policymakers, medical professionals, patients and caregivers, and the general public and empower them to advocate for those affected by rare diseases. A Canadian initiative, among many other global projects, includes:
-- Launch of "Facing Fabry Together," a film that tells the stories of families from France, Germany, Brazil, and Canada living with Fabry disease. The featured Canadian family live on the eastern edge of Nova Scotia. The mother's father and one of her two sons were diagnosed with Fabry disease in 2000. At the time, the mother was identified only as a carrier. In 2004, her increasing symptoms led to genetic testing, revealing what she and her husband had suspected. She was more than "just a carrier." Visit www.facingfabrytogether.com to watch the film online. Annual Patient Advocacy Leadership (PAL) Awards Additionally, Genzyme is pleased to announce the launch of the third annual Patient Advocacy Leadership Awards, a global grant program supporting non-profit patient organizations that work on behalf of individuals living with lysosomal storage disorders (LSDs), a group of rare, inherited disorders that cause progressive and debilitating health problems. Grants are awarded through a competitive process to organizations that seek funding for innovative programs and projects that improve disease awareness, patient care, support, and education. In 2012, more than 50 patient organizations representing 27 countries submitted proposals, and nine winners chosen by an external review committee received a total of $100,000 from Genzyme. Saluting Canada's New Orphan Drug Policy Genzyme commends the Federal Government for implementing the new Orphan Drug Policy, the first ever Canadian framework to increase access to new treatments and information for rare diseases. The Canadian Organization for Rare Disorders (CORD) needs to also be applauded for their persistency and tireless efforts in helping the Federal Government build this remarkable infrastructure that will benefit all Canadians who live with rare diseases. This highly anticipated regulatory framework is a major step forward, opening the way for research and development of new drugs for "orphan" indications and improving access to existing therapies. The Orphan Drug Policy also opens the way for a Canadian Plan for Rare Diseases, including guidelines for newborn screening, diagnosis, and the creation of Centres of Reference. "Canada's new orphan drug policy is a long overdue public commitment and Genzyme Canada commends the Federal Government for moving the rare diseases agenda forward to ensure our country is aligned with other global jurisdictions," says Peter Brenders, General Manager, Genzyme Canada. "And CORD is to be congratulated for its tireless dedication and determination in advocating for rare diseases over the years and pushing to make this policy a reality for this vulnerable and often forgotten patient population." More About Genzyme Patient Advocacy Leadership (PAL) Awards Organizations may apply for a Genzyme PAL Award for programs that support lysosomal storage disorder awareness, advocacy on behalf of patient communities, patient education, patient care, support and communication networks. This grant program is supplemental to Genzyme's existing grants program and will not replace annual local support for advocacy groups. Proposals will be reviewed by an external review committee. Applications must be received by June 7, 2013 and the award recipients will be announced by September 30, 2013. 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. Genzyme(®) is a registered trademark of Genzyme Corporation. All rights reserved. About Sanofi 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). Media Contacts: Noëlle-Dominique Willems (905) 267-3176 email@example.com Joanne Koskie (647) 259-3297 firstname.lastname@example.org SOURCE: Genzyme To view this news release in HTML formatting, please use the following URL: http://www.newswire.ca/en/releases/archive/February2013/27/c8673.html CO: Genzyme ST: Ontario NI: MTC NP HEA -0- Feb/27/2013 17:41 GMT