CAMBRIDGE, Mass.--(BUSINESS WIRE)-- Sanofi Genzyme, the specialty care global business unit of Sanofi, today announced its support for Rare Disease Day with events and activities around the world. In honor of this year’s Rare Disease Day theme, “Patient Voice,” Sanofi Genzyme launched its first-ever Expression of Hope e-book showcasing 10 years of moving and inspiring artwork produced by the lysosomal storage disorder patient community. These activities serve to raise awareness of rare diseases and help unite the global rare disease community on Rare Disease Day, which was established by the European Organisation for Rare Diseases (EURORDIS) in 2008.
“Advancing education, research and treatment options in the area of rare diseases has been at the heart of Sanofi Genzyme since our business was founded 35 years ago,” said Senior Vice President and Global Rare Diseases Franchise Head, Richard Peters, MD, Ph.D. “Rare Disease Day provides an important opportunity to further raise awareness of these debilitating diseases and the impact they have on patients and their families. Through events being held today, along with ongoing programs like Expression of Hope, we seek to amplify the voices of those impacted by rare diseases.”
Expression of Hope is a global disease awareness program featuring works of art created by individuals touched by lysosomal storage disorders. This unique program, which is celebrating its 10th anniversary this year, encourages anyone affected by a lysosomal storage disorder to create and submit a work of art that expresses their experiences of living with these rare, inherited diseases. To date, more than 450 people worldwide have told their stories through art. The art is showcased at www.expressionofhope.com where a new downloadable e-book is available, along with videos of featured artists who describe the power of the creative process in helping them give voice to their experiences.
In addition, Rare Disease Day 2016 is being marked with a busy program of events at Sanofi Genzyme sites worldwide. These include:
- Argentina: Each Friday in February, employees had the opportunity to hear from patients about their experiences with rare diseases. Additionally, a community awareness program including radio interviews by a physician who specializes in Fabry and Pompe disease, and a patient education program were held this month.
- Belgium: Employees in Diegem will have the opportunity to hear directly from one of the Expression of Hope artists and to view a display of artwork from the program. In Geel, an exhibit on rare diseases will be available to employees.
- Brazil: Sanofi Genzyme is supporting approximately 20 patient association events throughout Brazil with materials and information on rare diseases in Portuguese.
- Chile: Employees will attend a presentation to learn more about the importance of early diagnoses of rare diseases.
- China: Sanofi Genzyme in coordination with the Chinese Organization for Rare Disorders (CORD) will launch the “Say Thank You to the Rare” campaign to build awareness of rare diseases. A premier will also be held for RARE BOY, a short film telling the story of a young boy with Gaucher disease.
- Colombia: Sanofi Genzyme will participate in “#UnetuVoz por las Enfermedades Raras” (Raise your voice for Rare Diseases) an event in Bogota organized by more than 15 different patient organizations and attended by 2,000 patients and caregivers to promote awareness of rare diseases. Sanofi Genzyme will also support a national event organized by the Ministry of Health and different health sector stakeholders to sign a “public agreement” to promote and uphold the rights of rare disease patients in the country.
- Ecuador: Sanofi Genzyme held a conference for Rare Disease Day in Santo Domingo on February 24 and will participate in an event today with patients, delegates of foundations and associations, physicians and government authorities in Quito. Additional events for employees have taken part throughout the month of February.
France: Sanofi Genzyme will partner with the patient association
Alliance Maladies Rares and the children’s newspaper “Mon petit
Quotidien” to help teach children about rare diseases. Employees also
will volunteer in regional programs with Alliance Maladies Rares
taking place across the country.
- Germany: Employees in Neu-Isenburg have created and will perform a special song with lyrics based on words and messages from patients with rare diseases, their families and physicians.
- Greece: Employees will have the opportunity to hear from the President of the Pan Hellenic Association of Lysosomal Storage Disorders and a patient speaker, who is also a board member of the association. Additionally, employees will create a video to share their well-wishes for patients affected by rare diseases.
- Indonesia: Sanofi Genzyme will partner with University of Indonesia and Cipto Mangunkusumo Hospital to launch the first rare disease forum in the country.
- Italy: Sanofi Genzyme will support three days of events in Modena to raise awareness of rare diseases. Events include walks, a charity marathon and a public forum on rare diseases with the goal to raise funds to renew a city park and make it better accessible for people with disabilities.
- Japan: Sanofi Genzyme will co-sponsor Rare Disease Day 2016 in Tokyo for the seventh consecutive year. Additionally, employees will participate in a charity run and will make a financial contribution to a local patient organization for each participating runner.
- Netherlands: Sanofi Genzyme is co-organizing a public event in Beeld en Geluid. Approximately 20 employees will volunteer at the event, which will include programs for children and adults. Additionally, Expression of Hope artwork will be on display at an employee event in Naarden where employees will have the opportunity to hear from two of the artists in a plenary meeting.
- Philippines: Sanofi Genzyme will partner with the Philippines Society for Orphan Disorders to provide a day of extraordinary experiences for children with rare diseases, including the opportunity to fly in a helicopter and ride a boat on a naval base.
- Romania: Sanofi Genzyme will sponsor a number of rare disease symposia across the country for patients, physicians and journalists. Employees will participate in an activity writing messages of solidarity and will also raise funds for the Romanian Lysosomal Storage Disorder Foundation.
- Singapore, Malaysia, Vietnam and Hong Kong: Sanofi Genzyme is supporting Rainbow Across Borders in a patient photo exhibition “World Through my Eye” to raise awareness of rare diseases. Additionally, employees will have the opportunity to hear from patient speakers and participate in a photography contest to capture the unique and rare elements in their own lives.
- Spain: Sanofi Genzyme will support the Spanish Federation for Rare Diseases (FEDER) program “Creating Networks of Hope” focused on the importance of support networks for those with rare diseases.
- Taiwan: Sanofi Genzyme will partner with the Taiwan Foundation for Rare Disorders to raise awareness with a benefit basketball game.
- Thailand: Sanofi Genzyme will support a public event in partnership with a medical school and patient organization to raise awareness of rare diseases. Employees will also raise funds for a donation to the country’s lysosomal storage disorder foundation.
- Turkey: Employees will be providing rare disease day materials to healthcare practitioners and facilitating discussions on overcoming challenges in rare diseases.
- United Arab Emirates: Sanofi Genzyme will support a bicycle and motorcycle parade in partnership with a number of organizations to show solidarity with patients and their families and create public awareness of rare disease. Additional employee events will take place across Sanofi Genzyme locations in the Gulf and Middle East regions.
- United Kingdom: Sanofi Genzyme will premiere a short film based on artwork produced through its Expression of Hope program. Patient groups including the Niemann-Pick Disease Group (UK) and Gauchers Association (UK) are attending the premiere and will speak on the importance of patient voice. Sanofi Genzyme is also participating in policy-focused events to be held at parliament sites in Wales, Scotland, Northern Ireland and England.
- U.S.A: Employees will run an Olympic-style torch relay connecting six Sanofi Genzyme sites over a 45 mile course near Boston. To coincide with the relay, an event will be held at each site featuring a patient speaker, as well as activities to benefit the National Organization for Rare Disorders (NORD).
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