Mobilizing for Rare Disease Day in the Asia-Pacific Region: A Regional Report

Cara Hesse | April 03, 2015

For several years, Genzyme offices around the world have been recognizing Rare Disease Day as a way of motivating, inspiring and connecting to a global community dedicated to improving the lives of people affected by rare diseases. As the rare disease movement becomes increasingly global, so too has the level of engagement at Genzyme offices around the world. 

About their activities, Siaosze said, "All across Asia, local Genzyme offices organized internal events and collaborated with patient organizations on external awareness programs along this year’s theme of “Day-by-Day, Hand-in-Hand.” With 10 countries in the Asia Pacific region recognizing the day, we are more motivated, inspired and connected to the global community than ever before! — Siaosze Ng, Genzyme Director of Patient Advocacy and Communications, J-APAC Region

We are pleased to share this report from Siaosze Ng, Genzyme’s Director of Patient Advocacy and Communications in Singapore, who reports on Rare Disease Day activities in several countries in the Asia Pacific region, including China, Hong Kong, Japan, Korea, Malaysia, Philippines, Singapore, Taiwan, Thailand, and Vietnam. Here’s a quick snapshot of how Rare Disease Day went:

China: “One-Minute Action” Awareness Campaign --More than 100 colleagues in China joined the “One-Minute Action” – a corporate-wide activity designed for employees to learn about rare diseases and the impact of delays in treatment due to misdiagnosis.  A similar activity was also hosted in collaboration with 40 healthcare professionals across the country.

Hong Kong: An Extraordinary “Date” -- The HK MPS & Rare Genetic Diseases Mutual Aid Group (HKMPS) hosted a forum pairing seven rare disease patients with seven medical students from the University of Hong Kong (HKU). The first meeting of its kind, “The Extraordinary Day” aimed at giving medical students a chance to learn outside the classroom about the needs and difficulties of rare disease patients and their families.

Japan: Supporting Rare Disease Day since 2010 -- Genzyme has been the primary sponsor of Japan’s main RDD events since 2010, the first year that RDD was recognized in the country. This year’s events included panel exhibitions and speeches about rare diseases from patients and their families. Genzyme, Sanofi and Merial employees also took part in Japan’s annual charity Run for Rare Disease Day, as part of an effort to raise funds for local patient organizations.

Korea: 6-Minute Walkathon on Stones -- The “6-minute walk” is a clinical index for evaluating the walking ability of a patient with severe chronic diseases and rare diseases such as Hunter syndrome and Pompe disease. In partnership with Seoul Metropolitan Government, Good People International and Korean Society of Medical Genetics, Genzyme joined 1,087 citizens in walking barefoot down a path of stones and clocked a total of 6522 minutes.

Malaysia: Educational Forum about the Challenges of Diagnosis -- Genzyme recognized Rare Disease Day by hosting an educational forum with a pediatrician from Hospital Kuala Lumpur, who spoke to employees at the Sanofi Malaysia office about the challenges of diagnosis. This was followed by a presentation by the parent of a child with MPS disease, who discussed the challenges they faced in getting an accurate diagnosis.  

Philippines: Week-long Awareness and Celebration -- In the Philippines, Rare Disease Day is celebrated over an entire week and officially supported by Government officials such as Senator Pia Cayetano, one of the sponsors of the rare disease bill. Colleagues from both Sanofi and Genzyme participated in a series of events aimed at raising awareness, including a fund raising concert and Run for Rare, organized by Run Mania Philippines. The Discovery Channel also filmed a documentary based on the testimony of two brothers affected by a rare disease.

Singapore: A Walk in the Park and Art Therapy -- Genzyme Singapore celebrated Rare Disease Day with Rare Disorders Society Singapore (RDSS) and Club Rainbow at Bishan Active Park.  This was followed by an art therapy workshop run by The Red Pencil for children with rare disease and their families. They were encouraged to give freedom of expression on how they felt by painting. 

Taiwan: “Make a Doll; Brighten a World” -- Employees across three Taiwanese affiliate sites gathered to customize hand-made dolls for children with rare disorders. These are provided to children who are hospitalized due to a wide range of rare disorders. Genzyme also supported a local patient group in a “Cooking with Love” event, an educational event for patients to learn more about general health and nutrition.

Thailand: Huge turnout for 5th Rare Disease Day Celebration -- Close to 800 people turned out for Thailand’s Ride for Rare Campaign. The 30-50 km cycling event was opened by the Minister of Public Health and the Deputy Associate Director of National Health Security Office. 

Vietnam: Rare Disease Patient Club’s first Rare Disease Day -- Nearly 100 patients with rare diseases joined physicians, social workers and volunteers at the National Hospital of Pediatrics’ Rare Disease Day event. Patients and families shared their experience about the burden of the disease and their hope for treatment and a better life via speeches and recorded videos. The event was covered by the local media which gave voice to the patients to the wider public and their stakeholders.

Participants in Rare Disease Day Activities in Thailand

"One Minute Action" Awareness Campaign in China

Runners in Japan Participating in the Run for Rare Disease Day Event

 

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