Genzyme, a Sanofi company (EURONEXT: SAN and NYSE: SNY), 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, 2014 marks the seventh International Rare Disease Day. This year’s theme, “Care: Join Together for Better Care,” emphasizes that the many different facets of rare disease care represent a universal need for patients and their families around the world. Advocating at the local and national level to improve the lives of people living with a rare disease and their families is necessary. 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. These initiatives include:
- Genzyme is sponsoring a Rare Disease Day running/walking relay which connects 12 Genzyme sites around the world.
- Genzyme is participating in parliamentary events from Australia to the UK, and is sponsoring and participating on the “Science Behind Rare Diseases” panel discussion at the Rare Disease Caucus Briefing in Washington, D.C.
- In Naarden, over 50 employees join together for the “Express that you care” workshop creating 3 colourful paintings - one of the paintings will move to the new building of the Dutch Association for Children and Parents with Metabolic Diseases (VKS).
- Genzyme is the primary sponsor of Japan’s main Rare Disease Day event, held at Tokyo Station. The event includes a panel exhibition, speeches about rare diseases from patients and students, and a library of rare disease themed books.
- Genzyme is partnering with the Italian Rare Disease Patient Movement and the Italian Glicogenosis Association to showcase photos of people living with rare diseases in the Fotograf-Rare exhibition.
- In São Paulo, Brazil, Genzyme employees join patients and other supporters for a Rare Diseases Street Walk between Mario Covas Park and Trianon Park.
- In Spain, Genzyme is working with the Federation for Rare Diseases (FEDER) to teach schoolchildren about the daily realities faced by their classmates living with rare diseases through an ongoing program called “Take a Rare Challenge.”
- Genzyme is working with the Philippine Society for Orphan Disorders, Inc. (PSOD) to hold a Household Business Forum teaching caregivers of rare disease patients how they can earn a living while staying home to care for their family member.
- In Germany, healthcare policies related to this year’s theme “caring” will be discussed with an interdisciplinary “expert talk round” and with journalists.
- Genzyme is partnering with the Hong Kong Alliance of Patients’ Organizations (HKAPO), the Hong Kong Mucopolysaccharidoses and Rare Genetic Diseases Mutual Aid Group (HKMPS), and various stakeholders to organize a roundtable on rare disease policy development. HKAPO will use the output of the meeting to develop a white paper report on rare disease policy in Hong Kong.
- In France, Genzyme has joined forces with the patient association Alliance Maladies Rares to explain rare diseases to children by creating a partnership with the newspaper “Mon Petit Quotidien.” The proposed program is developed for French schools.
The National Tay-Sachs and Allied Diseases Association (NTSAD) in the United States was a recipient of a 2013 PAL Award for its proposal to create a video series designed to support siblings of children affected with life limiting illness, as well as those living with complex and chronic conditions.“We are genuinely grateful to Genzyme for this opportunity to further cultivate and foster a strong sibling community which will also give parents and providers a deeper understanding of the sibling experience,” said Kimberly Kubilus, Director of Family Services, NTSAD, 2011 and 2013 PAL Award Recipient. 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 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 6, 2014 and the award recipients will be announced by September 30, 2014. 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. About Sanofi Sanofi, an integrated global 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).