Chinese Organization for Rare Disorders

To promote exchange and cooperation among rare disease patients and organizations, medical specialists, pharmaceutical companies and governmental agencies.

Goals

To promote the rare disease patients and families to have an equal, respectable social environment in China.

Major Projects

• Information platform: establish an official information platform of rare diseases via websites, magazines, and social media. Provide the latest and most comprehensive updates of rare diseases on medicine, research, policy, as well as social and governmental activities. Create and maintain a Rare Disease Encyclopedia, a map for treatment, and a database with patient information;
• Rare Disease Patient Organizations Support: incubate and support rare disease patient organizations, help them increase service capacity, extend social impact, develop a supportive network for rare disease organizations and promote inter-organizational communication;
• Public Education: raise the awareness about rare diseases among the public; enhance public’s understanding of rare disease patients; host and promote Rare Disease Day activities in China;
• Policy Advocacy & Research: advocate for rare disease legislation and related policies by uniting various stakeholders on both local and national level. Conduct research and survey about rare disease communities, orphan drugs and relevant policies.

Major Funders

Genzyme Corporation, Biomarin, Geneva Global, Novartis, BGI, One Foundation, Ai You Foundation, Three Squirrels

Major Partners

Shanghai Medical Association, Beijing Medical Assocaiton, Guangdong Medical Assocaiton, Shanghai United Foundation, OFPiX, Guangdong Harmony Foundation, Grameen Vision, Sina, Tencent, NetEase, www.39.net, Beijing Angelmom Charity Foundation, NORD, EURORDIS

Distinctions

CORD works to promote exchange and cooperation among rare disease patients and organizations, medical specialists, pharmaceutical companies and governmental agencies. It is committed to enhancing public understanding of rare diseases, improving patients’ access to orphan drugs, fostering formulation of rare disease policies, and initiating international exchange and cooperation.