Genzyme Recognizes International Rare Disease Day with Global Education and Fund-Raising Events; Announces Founding Partnership of Give RARE
In support of International Rare Disease Day, the company is hosting several events internationally to help raise awareness of rare diseases as a critical global health issue requiring ongoing research, education and new treatments.
CAMBRIDGE, Mass.--(BUSINESS WIRE)--Genzyme, a Sanofi company, announced today that in support of International Rare Disease Day, the company is hosting several events internationally to help raise awareness of rare diseases as a critical global health issue requiring ongoing research, education and new treatments. Genzyme also announced that it is a founding partner of Give RARE, a rare diseases global giving day. Give RARE (www.giverare.razoo.com) is an online fund-raising event that encourages individuals and organizations to contribute and support the work being done by rare disease organizations within the United States through a single, on-line giving platform. Established by the Razoo Foundation, the 24-hour fundraising event will take place on March 3, 2015.
“I am grateful to Genzyme, its employees and their families for their unselfish support of the Give RARE event, but, moreover, for their ongoing commitment to patients and families who live with and are affected by the reality of a rare disease every day,” said Keegan Johnson, the organizer of Give RARE and the parent of a child afflicted with a rare disease. “The potential of the Give RARE 24 hours of fund-raising will only be realized through the support of committed partners like Genzyme, and will continue to be felt in the days, months and years after this inaugural event.”
February 28, 2015, marks the 8th annual International Rare Disease Day, and as in past years, Genzyme will host a series of events in locations where the company has a presence. In each location, Genzyme employees will partner with local patient organizations in activities that will heighten awareness of rare diseases and offer the chance to educate health policymakers, medical professionals, patients and caregivers, and the public at large, and urge them to become involved in advocacy opportunities.
“Each year on Rare Disease Day, the entire global Genzyme organization joins forces to show unified support for those affected by the full spectrum of rare diseases, to recognize the need for a dedicated effort toward further education, research and treatments,” said Genzyme’s Vice President of Global Patient Advocacy, Jamie Ring. “While progress has been made, our work continues together to raise awareness for all rare disease communities that remain in need.” More information on Genzyme’s activities for Rare Disease Day can be found athttps://raredisease.genzyme.com. These activities include:
Massachusetts: Genzyme’s signature Rare Disease Day event, an Olympic-style torch relay run (#GenzymeRelay) involving a host of global Genzyme locations, has been postponed due to poor weather-related conditions across the state. However, six Genzyme locations have planned fund-raising events on February 27 to support the National Organization of Rare Disorders (NORD), and will feature speakers from the Niemann Pick Type B community.
Taiwan: Employees will join 30 Fabry patients and their families at a “Cooking with Love” event where people can learn more about Fabry Disease, as well as health and nutrition for patients. Additionally, participants will sew hundreds of stuffed dolls that will be distributed to pediatric patients at Taiwanese rare disease wards and medical centers.
Hong Kong: Genzyme will support the inauguration ceremony of the Hong Kong Alliance of Rare Diseases (HKARD). Local employees, in partnership with Hong Kong Mucopolysaccharidoses and Rare Genetic Diseases Mutual Aid Group (HKMPS) will host an event featuring rare disease patient speakers.
Philippines: Employees, in partnership with the Philippine Society for Orphan Disorders, Inc. (PSOD) and key government officials participated in “Run for RARE” on February 22.
Brazil: Genzyme will support 18 different events throughout Brazil that are organized by patient organizations. Events include: legislative discussions, educational lectures, and the launch of a book written by the mother of an MPS patient.
Singapore: Employees will participate in a 2.5km fun walk that will also include pediatric patients from Club Rainbow Singapore and Rare Disease Society Singapore.
Netherlands: Employees will partner with Dutch Rare Disease Day in a national event at a local zoo, supporting the children’s program with 20 employee volunteers.
Thailand: Genzyme employees will support a day-long Rare Disease Day event in partnership with the Genetics divisions of six hospitals and five different patient organizations in Bangkok.
Belgium: Genzyme’s Brussels office will offer an educational program to employees on what it means to live with a rare disease and will support the global theme of “Living with a Rare Disease, Day-by-Day, Hand-in-Hand.”
South Korea: Genzyme, in conjunction with the non-profit organization Good People International, will collaborate with the Seoul Metropolitan Government and Korean Society of Medical Genetics for the “6-Minute Walk” campaign.
Germany: Employees will track their steps for one week in a pedometer challenge that will underscore their Rare Disease Day theme, “Keep Moving for Rare Diseases — Day-by-Day, Step-by-Step.” Colleagues in Switzerland and Austria are also participating in the pedometer challenge.
Japan: Employees will participate in Genzyme’s signature relay race and will make a financial contribution to a local patient organization for each participating runner.
France: Genzyme has formed a partnership with the patient association, Alliance Maladies Rares, in a program that helps explain rare diseases to children through the local newspaper, Mon Petit Quotidien.
Vietnam: On February 26, Genzyme supported National Pediatrics Hospital’s Rare Disease Day event, which included speeches from patients, doctors and the hospital’s senior leadership.
Australia: Rare Disease Day will be marked with an awareness event for Genzyme employees. The office will also support the National Plan for Rare Diseases Summit, hosted by Rare Voices in Australia.
Italy: On March 1, Genzyme Italy employees will join community members in the Modena Run4Rare relay. Funds raised will be used to purchase a special swing in the local playground for children with disabilities.
Spain: Genzyme Spain will support the Spanish Federation for Rare Diseases (FEDER) event that will focus on raising awareness and education around rare diseases.
China: Genzyme will support a press conference in Shanghai on Rare Disease Day to announce the newly-formed Rare Disease Expert Advisory Committee, and share achievements and future plans for the Shanghai Rare Disease Fund.
UK: Employees will run a 1, 3, 5 or 10k distance to show their support for rare disease patients. Employees will also participate in a series of policy-focused events at parliament sites in Cardiff, Edinburgh, London and Belfast.
Malaysia: Genzyme in Malaysia will host a Rare Disease Day event for employees on February 27 that will include a presentation from a local physician who will share his experience working with patients with rare diseases.
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.
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