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.
To find out more about Genzyme’s global Rare Disease Day activities around the world, please visit http://raredisease.genzyme.com/.In addition, Genzyme is pleased to announce the launch of the fourth annual Patient Advocacy Leadership Awards (PAL 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 and support, and education. In 2013, more than 40 patient organizations representing 25 countries submitted proposals. Eight recipients were chosen by an external review committee and collectively received over $100,000 from Genzyme, to support programs in Chile, China, Denmark, Hungary, the Philippines, the United Kingdom and the United States.
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