Sanofi Genzyme Recognizes Rare Disease Day 2017 with Program of Events around the World
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. Observed annually on the last day of February, Rare Disease Day is an international awareness campaign established by the European Organisation for Rare Diseases (EURORDIS) in 2008, and supported by hundreds of other patient organizations.
Rare Disease Day provides an important opportunity to shed light on the impact that these frequently debilitating diseases have on patients and their families. Given their rarity, these conditions are often difficult to diagnose and treat. Patients can endure a long odyssey involving many specialty doctors, tests, and numerous misdiagnoses.
“Patients with rare diseases often go years or even decades without a correct diagnosis,” said North America Head of Rare Diseases, Yann Mazabraud. “Sanofi Genzyme is dedicated to working together with the patient, physician and research community to shorten the journey to diagnosis, through support of focused education, testing and diagnostic initiatives. Our vision is that by 2025, all patients with the rare diseases that we serve will have access to an early diagnosis and appropriate treatment.”
This year, Sanofi Genzyme launched a global initiative called Pledge 4 Rare, aimed at bringing together the global rare disease community to raise awareness of the more than 7,000 different rare diseases collectively affecting more than 350 million people around the world. The campaign encourages people to pledge to run or walk a mile or more on Rare Disease Day in support of the rare disease community, and to share photos and videos on social media using the hashtag #Pledge4Rare. Follow the conversation on Sanofi Genzyme’s Twitter and Facebook channels.
In addition to the global initiative, Rare Disease Day 2017 is being recognized with a program of events at Sanofi Genzyme sites around the world including:
- Argentina: Employees will have the opportunity to hear from a patient about their journey living with Fabry disease, as well as key opinion leaders about the evolution of the disease.
- Australia: Sanofi Genzyme will host an event to bring together patients, caregivers, advocates, associations, and key opinion leaders to discuss the need for collaboration to make meaningful, sustainable change for rare disease patients, with a focus on research initiatives. The Sanofi Australia head office in Sydney will also feature prominent Rare Disease Day signage to raise public awareness to the more than 70,000 commuters that pass the building each day.
- Colombia: Organized by 22 patient associations, and supported by Sanofi Genzyme, patients and their families will gather to construct 1,000 origami birds. Approximately 1,500 attendees will make these paper figures that symbolize the need for better access and care, as well as earlier diagnosis for the more than 13,000 families affected by rare diseases in Colombia.
- Ecuador: Sanofi Genzyme is supporting five events at hospitals around Ecuador, including a primary event at Carlos Andrade Marin Hospital. It will focus on lysosomal storage disorders, and include participation from EURORDIS, the Ministry of Health, patients, and local media.
- France: Sanofi Genzyme is launching the first French website focused on Pompe disease, providing general disease information, as well as resources for patients and families. Sanofi Genzyme is a historic partner of Alliance Maladies Rares, a federation of over 200 organizations that coordinate Rare Disease Day initiatives across every region of France. Sanofi Genzyme is supporting a “pop up village” in the region of Dijon that will explore rare diseases through activities including a DNA experiment workshop and giant wall painting.
- Germany: Patients, their families and physicians have been asked to share their perspectives on rare disease research. On Rare Disease Day, Sanofi Genzyme employees will participate in an event in Neu-Isenburg where a rapper will perform the resulting perspectives live in a musical improvisation.
- Greece: Sanofi Genzyme is one of the main sponsors of the Rare Disease Day event hosted by the Greek Alliance for Rare Diseases (PESPA), an affiliate of EURORDIS, bringing together patients, families, caregivers, healthcare professionals, researchers, policy makers, universities and pharmaceutical companies around this year’s theme, “With research, possibilities are limitless.”
- Hong Kong: Sanofi Genzyme will sponsor a Rare Disease Day Symposium bringing together 200 attendees from government, academic institutions, patient groups and pharmaceutical companies to address the importance of patient registries, as well as how healthcare and social welfare systems can respond to the needs of rare disease patients. Sanofi Genzyme is also supporting a collaboration between the Hong Kong Press Photographers Association and the Hong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group (HKMPS) to help 13 rare disease patients fulfill their dreams, including flying and being a character in an animated movie. The patients’ experiences will be photographed and displayed at an exhibition.
- Indonesia: Sanofi Genzyme will hold a seminar for pediatricians, patient groups and policy makers called “Care4Rare.” The seminar will be followed by an event for top tier local media to have in-depth discussions about the current state of rare diseases in Indonesia.
- Ireland: Employees in Waterford will participate in a run/walk to support the Sanofi Genzyme Pledge 4 Rare global initiative.
- Italy: In partnership with the Italian Federation for Rare Diseases, Sanofi Genzyme will host #ModenaRun4Rare, a non-competitive run to raise awareness for rare diseases, as well as exhibitions of Rare Lives, the photographic journey by Aldo Soligno aiming to investigate needs, hopes, difficulties, but above all, joys and daily achievements of those living a "rare life.” This year, the exhibitions will be held in five Italian cities – Modena, Milan, Turin, Genoa and Florence.
- Japan: Sanofi Genzyme will co-sponsor Rare Disease Day 2017 in Tokyo for the eighth consecutive year. Employees will participate in a charity run/walk and a donation will be made to a local patient organization on behalf of each participating runner.
- Malaysia: Coordinated by Malaysia Lysosomal Disease Society, Malaysia Rare Disorder Society and Malaysia Metabolic Society, Sanofi Genzyme is supporting the launch of the ‘Malaysia Rare Disease Impact Study’ to document and understand the psychosocial impact of rare diseases. Employees will learn about challenges patients living with Pompe disease face through a demonstration of the 6-minute walk test.
- Netherlands: Employees will have the opportunity to hear from a patient living with acid sphingomyelinase deficiency (ASMD). They will also participate in a tandem cycling event in support of the Sanofi Genzyme Pledge 4 Rare global campaign.
- Philippines: Sanofi Genzyme will support the Philippines Society of Orphan Disorders and National Institute of Health in hosting the first Philippines Symposium on Rare Disease, one year after the Philippines Rare Disease Act was passed by Congress.
- Poland: Employees will have the opportunity to meet and hear from a patient speaker. They will be encouraged to log miles for the Sanofi Genzyme Pledge 4 Rare global campaign by riding stationary bicycles and climbing staircases in the office. A video of players from the Legia Warszawa football team supporting the rare disease community will also be shown to employees.
- Singapore: Sanofi Genzyme will support a Rare Disease Day celebration where Rainbow Across Borders will release the results of a yearlong Singapore Rare Disease Impact Study. They will also unveil the Regional Rare Disease Impact Study project – a commitment from patient advocacy organizations and government agencies to discuss approaches for sustainable care and access to medical treatment. Employees will participate in a run/walk to support the Sanofi Genzyme Pledge 4 Rare global initiative.
- Sweden: Sanofi Genzyme will host a patient speaker to speak to employees about living with Pompe disease.
- Taiwan: Sanofi Genzyme will collaborate with the Taiwan Foundation of Rare Disorders to host a ‘Rare Disease Tee Ball Day’ for more than 80 children living with rare diseases, their caregivers and families. The day promotes having fun and taking part in physical activity in a safe environment for children with rare diseases.
- Thailand: Sanofi Genzyme will support a full day event in Railway Park, Bangkok to recognize Rare Disease Day. Organized by medical schools, hospitals and patient organizations, there will be a charity run with more than 300 attendees including patient families, celebrities, volunteers, medical students and journalists.
- Ukraine: Sanofi Genzyme will support a roundtable event, organized by patient associations, which will bring together media, key opinion leaders and government to focus on access to treatment for orphan disease patients. Patient speakers will also visit Sanofi Ukraine’s office to share their stories with employees.
- United Kingdom: Sanofi Genzyme is supporting a national print campaign in The Guardian newspaper, aimed at showcasing passionate and engaging case studies alongside expert medical insight to help draw attention to people affected by rare diseases. It will include an infographic on Sanofi Genzyme’s long-standing commitment to research and the rare disease community.
- United States: Employees will participate in a run/walk from the Massachusetts State House to Sanofi Genzyme’s global headquarters in Cambridge to support the Pledge 4 Rare global initiative. Events will be held at six Massachusetts sites featuring patient speakers, as well as activities to benefit the NIH Undiagnosed Diseases Network. Sanofi Genzyme also launched a new program called the TORCH Awards to recognize individuals who have made a significant contribution to the lysosomal storage disorder community by educating, empowering, advancing or connecting patients with information, resources or each other.
- Vietnam: Rare Disease Day in Vietnam will be organized by the National Hospital of Pediatrics for the fifth consecutive year. Sanofi Genzyme will support the celebration, which includes musical performances and activities for children, as well as speeches from physicians and government officials. More than 100 participants will also ride a “Hope Train,” symbolizing working together to support rare disease patients. Employees will have the opportunity to hear from a patient speaker and donate to the Vietnam Rare Diseases Network.
Sanofi, a global healthcare leader, discovers, develops and distributes therapeutic solutions focused on patients' needs. Sanofi is organized into five global business units: Diabetes and Cardiovascular, General Medicines and Emerging Markets, Sanofi Genzyme, Sanofi Pasteur and Consumer Healthcare.
Sanofi Genzyme focuses on developing specialty treatments for debilitating diseases that are often difficult to diagnose and treat, providing hope to patients and their families.
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