Genzyme marks 2013 International Rare Disease Day

Published on February 28, 2013 at 3:40 AM · No Comments

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, 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. These initiatives include:

  • Rare Disease Day running/cycling relay connecting Genzyme sites in Naarden, the Netherlands; Waterford, Ireland; and four Massachusetts locations
  • Launch of "Facing Fabry Together," a film that tells the stories of families from France, Germany, Brazil, and Canada that are each living with Fabry disease. Visit www.facingfabrytogether.com to watch the film online.
  • Family forum held in Singapore for rare disease patients and their families, friends, and caregivers
  • Comic book art contest meant to share real-life stories of people living with Mucopolysaccharidoses (MPS) in Hong Kong
  • Rare disease symposium held in Russia for policymakers and the public
  • Documentary film project about individuals with rare diseases filmed in Taiwan
  • "Roads & rails" public awareness campaign, displaying rare disease information on highly trafficked roads and train stations in France
  • Spain's "Esperanza" (hope) product line, including mugs, bracelets, key chains, magnets, and other materials designed to allow people to express solidarity with those living with rare diseases
  • Chile's event to empower children with rare diseases to paint self-portraits and share their paintings with policymakers
  • Art exhibition in Italy featuring paintings, photos, videos, and theatrical performances created by rare disease patients and advocates
  • 20 events in Brazil, including a walk in Sao Paulo, a bike ride in Recife City, and the launch of an educational illustrated book on Gaucher disease

In addition, Genzyme is pleased to announce the launch of the third 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 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.

"Promoting understanding of the journey of those affected by rare diseases while advancing therapies and scientific innovation are core to who Genzyme is, and it is an honor to partner today with advocacy organizations globally to recognize Rare Disease Day," said Jamie Ring, Genzyme's Vice President of Global Patient Advocacy for Rare Diseases. "As we begin the PAL Award process again this year, we look forward to seeing how this program can be utilized to support the evolving needs of rare disease advocacy leaders around the world. Together, we recognize that there is still great work - and opportunity - ahead of us."

Source:

Genzyme

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