Advocates Meet in Beijing to Focus on Collaboration in Asia Pacific

Cara Hesse | December 04, 2012

LSD patient groups from all over Asia Pacific recently gathered in Beijing, China, to network and to share their perspectives on the importance of collaboration between government, industry and patient groups. The Rare Disease Multi-Stakeholder forum entitled, “Access to Rare Disease Therapy – the Role of the Physician, Policy Maker & Patient Support Group,” was an opportunity for advocates across the region to share information and best practices on increasing access to treatment for rare disease patients in Asia Pacific. Representatives from 18 patient groups from 10 countries – Australia, China, Hong Kong, Korea, the Netherlands, the Philippines, Singapore, Taiwan, Thailand, and New Zealand – participated in the Forum, and presented 32 posters.

The Multi-Stakeholder Forum was sponsored by Genzyme, in partnership with the Shanghai Medical Association, the Society of Rare Diseases and the China Center for Pharmaceutical International Exchange (an affiliate of the China State Food and Drug Administration).

For many patient groups, a key highlight for them was meeting with well-known rare disease advocate Maryze Schoneveld van der Linde from the Netherlands, a former board member of the International Pompe Association based out of the U.K. Maryze shared her experiences of working across government, industry and civil society to increase access to treatment for LSD patients. “Maryze helped energize and inspire patient groups with her personal story, insights and expertise. She is a true leader in the rare disease community and we were delighted to help make those connections,” said Poh Lin Lim, Rare Disease Commercial Development Director of Genzyme Japan-Asia Pacific Region. 

The timing of the meeting couldn’t have been better, given the dynamic policy environment playing out in many countries throughout the region. In the Philippines and China, for example, there is an on-going public dialogue about the need for national rare disease legislation. In Australia, a Rare Disease National Plan is being discussed while in other countries such as Thailand, Hong Kong, and Malaysia there is an on-going dialogue around sustainable funding for ERT.

Pictured left to right: Patient group representatives from Taiwan, the Netherlands, Korea and China shared their perspectives on the challenges and opportunities to support patient access.

Pictured: Yoshikazu Nakamura, Regional President of Japan-Asia Pacific, Genzyme; Mr. Hyun-min SHIN, Chairman of the Korean Organization for Rare Diseases; and Kay BAE, General Manager for Korea, introduce the "Angels Spoon" mascot for Rare Disease Awareness in Korea.

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