Rare Disease Groups Call For More Legal Protection

Groups representing people with rare diseases have staged a protest outside the government's headquarters warning that Hong Kong is deviating from international practice by not having specific laws in place to support such patients.

Labour Party lawmaker Fernando Cheung is trying to secure legislation to guarantee that those with rare illnesses get the treatment and drugs they need, but officials say it is unnecessary.

Tsang Kin-ping, the president of the Hong Kong Alliance for Rare Diseases, was at the protest on Monday and told RTHK's Candice Wong that the government has left them no choice but to support the proposed legislation.

Tsang said many countries have an official definition of what constitutes a rare disease, adding that in recent years, the mainland announced 121 rare diseases and took measures to address the issue.

He told RTHK's Candice Wong that the World Health Organisation has also urged governments to treat rare diseases as a top-priority issue in public healthcare, but the Hong Kong government is “seriously lagging behind”.