On Sept 21, the Chinese Organization for Rare Disorders (CORD) will hold the third China Rare Disease Summit in Beijing.

The Chinese Organization for Rare Disorders (CORD), founded by the China-Dolls Center for Rare Disorders, is a non-profit organization specializing in fields of rare diseases. CORD works to promote exchange and cooperation among rare disease patients and organizations, medical specialists, pharmaceutical companies and governmental agencies. It is committed to enhance public understanding of rare diseases, improve patient access to orphan drugs, push for rare disease-related policies, initiate international exchange and cooperation, and contribute to progress in treatment of rare diseases in China.

Rare diseases are relatively new in China. Problems have arisen in low-level medical research and treatment, poor access to orphan drugs and lack of social security policies concerning rare diseases.

The United States enacted the Orphan Drug Act (ODA) early in 1983 to protect the basic medical care rights of patients. However, China hasn't issued a national rare diseases law so far. The expenses of orphan drugs cannot be reimbursed by health insurance or commercial insurance schemes. The health rights of millions of patients cannot be safeguarded.

After two years of development, the China Rare Disease Summit has become the largest comprehensive rare disease forum in China since its creation in 2012. The summit plays an active role in fostering rare disease policies and promoting social involvement.

The third China Rare Disease Summit has two agendas. The forum will be held in the morning when participants will discuss issues at policy, medical care and society levels. The China Rare Disease Diagnosis and Management Seminar will be held in the afternoon, during which Chinese and foreign leading medical specialists will have discussions about recent progress in diagnosis, treatment, detection and research in their respective fields of rare diseases.

The organization sincerely invite members from governmental agencies, medical fields, rare disease organizations, pharmaceutical companies, the press and other people of relevance to participate in the summit. It is also looking forward to discussing cooperation with companies, foundations, medical professionals and media.