Find support, or help research
People near you who know what living with Pompe disease is like, and ways you can help find better treatments.
Support groups in India
- LSD Support Society (LSDSS)LSD Support Society (LSDSS): patient organisation in India supporting people with Fabry disease, Gaucher disease, Pompe disease; member of IPA, FIN.All of India
- Indian Organization for Rare DiseasesIndian Organization for Rare Diseases: national rare disease alliance in India supporting people with rare diseases; member of RDI.All of India
- Organization for Rare Diseases India (ORDI)Organization for Rare Diseases India (ORDI): national rare disease alliance in India supporting people with rare diseases; member of RDI, IPA.All of India
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 India 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 Pompe 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 Pompe disease to compare with. Family and friends can help.