Additional file 2: of The role of patient organizations in the rare disease ecosystem in India: an interview based study

a) Details of each PG. Name, legal status, international partners, regional chapters, whether first PG in India, patient registry, number of patients associated with the PG and website. b) RD management. Name of PG; PGsâ views on alternative treatment options; globally available modes of management or treatment not yet available in India; whether prenatal diagnosis is possible; counselling provided to patients by the PGs; research by the PGs, directly or in collaboration; and whether RD is covered by the Rights of Persons with Disabilities Act, 2016. c) Challenges faced by the PGs. Challenges faced by patients in the diagnosis, treatment and management of the disease or condition. d) Support received by PGs from various sources. Support was received from the following sources, largely within the country: central government; local authorities or state government; public (crowd funding); industry; healthcare providers; philanthropic organizations; company CSR funds; local organizations or NGOs. e) Recommendations made by the PGs to various stake holders. f) Interviewee story. Each interviewee had a reason to join or start a PG. These stories are captured here in brief. (XLSX 38 kb)