Genzyme Events: 2012
2012 Theme: "Rare but Strong Together"
In honor of Rare Disease Day on February 29, 2012, Genzyme was proud to host a variety of events around the world. Following are some highlights of 2012 celebrations at our global sites and their surrounding communities.
Albania, Kosovo, and Macedonia | Bulgaria | France |
Mumbai, India | Israel | Russia |
Serbia and Montenegro | Singapore and Malaysia |
Slovenia | Spain | Taiwan |
Bangkok, Thailand | Massachusetts, USA
Albania, Kosovo, and Macedonia
Advocates and representatives from the three countries of Macedonia, Albania, and Kosovo joined forces on a letter-writing and email campaign appealing to local and national policymakers about the importance of supporting rare disease efforts. Albania also developed a presentation about implementing rare disease initiatives to share with medical authorities, key opinion leaders, patient organizations, and the media.
In Bulgaria, Genyme participated in Rare Disease Day celebrations sponsored by a partnership between the National Alliance for People with Rare Diseases (NAPRD), the Bulgarian Ministry of Health, and First Lady Zorka Purvanova. Activities included patients sharing their stories onstage at a charity theater performance, as well as a collaborative kite-flying spanning several cities to colorfully represent the day’s theme of “solidarity.”
For the past 25 years, France’s only visible activity to bring attention to rare diseases has been a telethon to promote awareness and raise funds for research. But 2012 marked a changed, the first year in which Genzyme partnered with Alliance Maladies Rares (the Alliance for Rare Diseases, a national organization) to commemorate Rare Disease Day in a more active and visible way, starting with a brochure and pamphlet campaign. Efforts are continuing through March, with plans for alpine skiing charity events featuring free concerts by French pop singer Christophe Maé, an informational blog, and contributions from sports and television personalities to bring ongoing attention to the campaign.
India’s 2012 Rare Disease Day activities were focused in Mumbai, where the Lysosomal Storage Disorders Support Society teamed up with the Department of Pediatrics from King Edward Memorial (KEM) Hospital and Seth G.S. Medical College to host a conference for doctors, patients, families, and the media at the Nehru Science Centre. Famed Bollywood singer Shaan attended as guest of honor to perform songs of encouragement and inspiration for children living with lysosomal storage disorders.
Genzyme Israel partnered with Medison Pharma, an Israeli pharmaceutical marketing group, to host a day-long meeting focused on rare diseases at Schneider Children’s Medical Center of Israel in the city of Petach Tikva, just outside Tel Aviv. Other public awareness efforts included a prominent feature on one of Israel’s leading Internet portals highlighting a Gaucher patient, as well as rare disease campaigns throughout several Orthodox Jewish media outlets.
A tremendous awareness effort and victory for patients and advocates, 2012 was announced by the Russian Health Authorities as Rare Disease Year in Russia, bringing hope to patients and those currently lacking treatment and appropriate care.
Genzyme sponsored a press club in St. Petersburg at ITAR-TASS, Russia’s primary media agency, which brought together St. Petersburg health authorities, patient groups, media, and medical professionals.
Under a Ministry of Health initiative, we sponsored a series of round tables within different cities of Russia, including Moscow, Orenburg, and Kazan, where patient groups met and discussed access to therapy, diagnostics, and other important issues affecting rare disease patient care. Genzyme representatives also participated at a round table held at the Public Chamber of the Russian Federation and organized by a patient group in order to develop messages for the State Duma (Russia’s main legislative body) and the Ministry of Health in support of patients with rare diseases.
Serbia and Montegnegro
Local Genzyme offices in Serbia and Montenegro partnered with the National Organization of Rare Diseases Serbia (NORDS) and the LIFE Association to support Rare Disease Day. Activities included a press release to raise awareness, media events to which local and foreign institutions were invited, and recognition and promotion of the newly established Association LIFE Award.
Singapore and Malaysia
In both Singapore and Malaysia, Rare Disease Day was commemorated with special events to kick off campaigns for raising awareness about the importance of fair access to medical treatment in these countries. The events were sponsored by the Rare Disease Society of Singapore and the Malaysia Lysosomal Diseases Association, and the festivities included magic shows, balloon-sculpting performances, and a variety of special guests.
Leading up to Rare Disease Day in Slovenia, patient organizations set up informational booths at a local hospital to distribute educational materials and raise awareness. For the day itself, Genzyme joined forces with local patient advocacy organizations to sponsor a press conference attended by industry representatives and patients as well as the media, creating opportunities for press coverage on patients and their stories about living with lysosomal storage disorders.
In Spain, Genzyme and Sanofi teamed up with FEDER, the Spanish Federation of Rare Diseases, to produce a video promoting the organization and its efforts. We issued a press release to announce and publicize the video. To celebrate the day, Genzyme employees were encouraged to wear awareness-raising rare disease bracelets, and were photographed and filmed for an upcoming photo and video montage to commemorate the day.
In the weeks leading up to Rare Disease Day, Sanofi Taiwan held a contest soliciting the best ideas for charitable initiatives focused on rare disease patients and their needs. On the day itself, our local office hosted a tea party celebration, where the 10 contest winners were announced and awarded tickets to a concert by Taiwanese singer Mr. Lin.
To encourage our Thai employees to get involved in Rare Disease Day, Sanofi Thailand held a screening of “Extraordinary Measures,” a movie that explored efforts to find a treatment for Pompe disease. Public events included a group media interview at Bangkok’s Ramthibodi Hospital with a key opinion leader and head of the Genetic LSD Foundation. The day’s festivities ended on a celebratory note with a mini-concert held at Siam Square.
Hundreds of employees at Genzyme’s Massachusetts sites participated in a joint relay event to bring awareness to rare diseases and raise funds for the National Organization for Rare Disorders (NORD). The relay, covering 28.5 miles, connected Genzyme’s Framingham, Waltham, Allston, and Cambridge sites. Enthusiasm from our staff was unparalleled, as over 100 employees—including Genzyme CEO David Meeker—took to the course to run for rare disease. Each of our sites also hosted an event at which a Gaucher patient and representative from NORD attended as guests of honor to speak about the importance of Rare Disease Day and share their own stories.