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Table 1 Details of the PGs and interviewees

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

  Organization details Interviewee details
Organization name
Official website
Disease of interest Location of headquarters, Year of registration, if applicable
[Year of start of work]
Name of the interviewee Is the interviewee a founding member? Interviewee involved with an RD in what capacity?
1 Indian Organization for Rare Diseases (I-ORD) All rare diseases In US: Minnesota, 2005;
In India: Hyderabad, 2008 [2005]
Dr. Ramaiah Muthyala Yes Volunteer/ Scientist
2 Organizations for Rare Diseases India (ORDI) All rare diseases In India: Bangalore, 2014;
In US: Virginia, 2017 [2004]
Mr. Prasanna Shirol Yes Parent
3 Centre for Health Ecologies and Technology (CHET) All rare diseases Bangalore, 2015 Dr. Namitha A. Kumar Yes Patient
4 Foundation for Research on Rare Diseases and Disorders (FRRDD) All rare diseases Chennai, 2010 [2009] Dr. Duraiswamy Navaneetham Yes Volunteer/ Scientist
5 Asha Ek Hope Foundation (AEHF) Amyotrophic lateral sclerosis (ALS) Mumbai, 2011 [2004] Ms. Shera Mukherjee No Patient
6 Down Syndrome Federation of India (DSFI) Down syndrome (DS) Chennai, 1984 Dr. Surekha Ramachandran Yes Parent
7 Dystrophy Annihilation Research Trust (DART) Muscular dystrophy (MD) Bangalore, 2012 Mr. Ravdeep Singh Anand Yes Parent
8 Fragile X Society - India (FXS-I) Fragile X syndrome Mumbai, 2007 Ms. Shalini Kedia Yes Parent
9 Hemophilia Federation of India (HFI) Hemophilia Delhi, 1983 Mr. Vikash Goyal No Parent
10 Iksha Foundation (Iksha) Retinoblastoma Bangalore, 2010 Mr. Thanmaya Bekkalale Yes Volunteer
11 Indian Institute of Cerebral Palsy (IICP) Cerebral palsy (CP) Kolkata, 1974 Dr. Sudha Kaul Yes Parent
12 Indian Patients Society for Primary Immunodeficiency (IPSPI) Primary immune deficiency (PID) Noida, 2004 Ms. Rubby Chawla Yes Parent
13 Indian Rett Syndrome Foundation (IRSF) Rett syndrome (RS) Delhi, 2010 [2007] Dr. Rajni Khajuria Yes Volunteer/ Scientist
14 Lysosomal Storage Disorder Support Society (LSDSS) Lysosomal storage disorder (LSD) Delhi, 2010 Mr. Manjit Singh Yes Parent
15 Metabolic Errors and Rare Disease Organization of India (MERD India) Inborn errors of metabolism (IEM) Jaipur, not registered [2011] Mr. Vikas Bhatia Yes Parent
16 Multiple Sclerosis Society of India (MSSI) Multiple sclerosis (MS) Delhi, 1985 Ms. Renuka Malakar No Spouse
17 Sjögren’s India (SI) Sjorgen’s syndrome (SS) Ahmedabad, not registered [2006] Ms. Kirtida Oza Yes Patient
18 Thalassemia and Sickle Cell Society (TSCS) Thalassemia and sickle cell anemia Hyderabad, 1998 Dr. Suman Jain Yes Volunteer
19 World Without GNE Myopathy (WWGM) GNE myopathy (GM) Delhi, 2015 Dr. Shilpi Bhattacharya Yes Patient