The first national directory of rare diseases published

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Last Tuesday, the 22nd of May 2018, the National Health Commission of the People’s Republic of China, the Ministry of Science and Technology, the State Drug Administration, the State Administration of Traditional Chinese Medicine and the Ministry of Industry and Information Technology jointly published the “First Directory of Rare Diseases”, including 121 different rare diseases.

To strengthen the work of prevention against rare diseases in China and to safeguard the health of the general public, an expert committee for the treatment and protection of sufferers of rare diseases was commissioned in December 2015. In 2017 they started work on a national directory of rare diseases.

Now the inaugural directory has been completed and published. The directory aims to develop prevention, screening and treatment for rare diseases in all regions of the country. It further aims to stimulate research in relevant fields, create public safeguards and inform policy for medical assistance and other related fields by providing reference points and a basis of information.

The Gene Club (基因慧), a WeChat account belonging to a big data consultancy company that covers genetic research, invited seven clinical, research and civil society experts from the Rare Diseases Public Interest Group (罕见病公益组织) to explain the document (see here). The experts, who went from patients, advocates, doctors and researchers to NGO directors, generally shared the feeling that the directory is a step in the right direction and will aid the continued development of awareness and support for those suffering from rare diseases. Although there are things that can be improved and the directory is by no means complete, they are generally hopeful that this is just the beginning and that further editions, alongside this current one, will better inform healthcare policy care and improve the lives of patients with rare diseases.