Find support, or help research
People near you who know what living with ALS (motor neurone disease) is like, and ways you can help find better treatments.
Support groups in China
- 北京东方丝雨渐冻人罕见病关爱中心Beijing-based charity for people with ALS/MND and their families, offering ventilator subsidies, care kits, home-care training, patient forums and disease information.All of China
- 病痛挑战基金会Illness Challenge Foundation: foundation in China supporting people with rare diseases; member of RDI.All of China
- 蔻德罕见病中心Chinese Organization for Rare Disorders (CORD): national rare disease alliance in China supporting people with rare diseases; member of RDI.All of China
Contact details come from each group's own page and are checked every 3 months.
Help research
You do not need to join a trial to help. Below are the programmes we found in China and how to reach them. You contact them yourself: Frontlight does not collect or pass on your details.
Give blood or tissue for researchResearchers use stored samples to find what causes ALS (motor neurone disease).
Share your health dataA registry collects health data, without your name, so research teams can study many people at once.
Take part as a healthy volunteerStudies need people without ALS (motor neurone disease) to compare with. Family and friends can help.