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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?
  UMBRELLA ORGANIZATIONS (UOs)      
1 Indian Organization for Rare Diseases (I-ORD) http://www.i-ord.org/ 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) https://ordindia.org/ All rare diseases In India: Bangalore, 2014;
In US: Virginia, 2017 [2004]
Mr. Prasanna Shirol Yes Parent
  OTHER ORGANIZATIONS OF NATIONAL SCOPE (OONS)      
3 Centre for Health Ecologies and Technology (CHET) http://iiacd.org/chet.html All rare diseases Bangalore, 2015 Dr. Namitha A. Kumar Yes Patient
4 Foundation for Research on Rare Diseases and Disorders (FRRDD) http://www.rarediseasesindia.org/ All rare diseases Chennai, 2010 [2009] Dr. Duraiswamy Navaneetham Yes Volunteer/ Scientist
  DISEASE SPECIFIC GROUPS (DSGs)      
5 Asha Ek Hope Foundation (AEHF) http://www.ashaekhope.com/ Amyotrophic lateral sclerosis (ALS) Mumbai, 2011 [2004] Ms. Shera Mukherjee No Patient
6 Down Syndrome Federation of India (DSFI) http://www.downsyndrome.in/ Down syndrome (DS) Chennai, 1984 Dr. Surekha Ramachandran Yes Parent
7 Dystrophy Annihilation Research Trust (DART) https://dartindia.in/ Muscular dystrophy (MD) Bangalore, 2012 Mr. Ravdeep Singh Anand Yes Parent
8 Fragile X Society - India (FXS-I) http://www.fragilex.in/ Fragile X syndrome Mumbai, 2007 Ms. Shalini Kedia Yes Parent
9 Hemophilia Federation of India (HFI) http://hemophilia.in/ Hemophilia Delhi, 1983 Mr. Vikash Goyal No Parent
10 Iksha Foundation (Iksha) http://ikshafoundation.org/ Retinoblastoma Bangalore, 2010 Mr. Thanmaya Bekkalale Yes Volunteer
11 Indian Institute of Cerebral Palsy (IICP) http://www.iicpindia.org/ Cerebral palsy (CP) Kolkata, 1974 Dr. Sudha Kaul Yes Parent
12 Indian Patients Society for Primary Immunodeficiency (IPSPI) https://www.ipspiindia.org/ Primary immune deficiency (PID) Noida, 2004 Ms. Rubby Chawla Yes Parent
13 Indian Rett Syndrome Foundation (IRSF) http://www.rettsyndrome.in/ Rett syndrome (RS) Delhi, 2010 [2007] Dr. Rajni Khajuria Yes Volunteer/ Scientist
14 Lysosomal Storage Disorder Support Society (LSDSS) http://www.lsdss.org/ Lysosomal storage disorder (LSD) Delhi, 2010 Mr. Manjit Singh Yes Parent
15 Metabolic Errors and Rare Disease Organization of India (MERD India) http://www.merdindia.com/ Inborn errors of metabolism (IEM) Jaipur, not registered [2011] Mr. Vikas Bhatia Yes Parent
16 Multiple Sclerosis Society of India (MSSI) http://www.mssocietyindia.org Multiple sclerosis (MS) Delhi, 1985 Ms. Renuka Malakar No Spouse
17 Sjögren’s India (SI) http://www.sjogrensindia.org/ Sjorgen’s syndrome (SS) Ahmedabad, not registered [2006] Ms. Kirtida Oza Yes Patient
18 Thalassemia and Sickle Cell Society (TSCS) http://tscsindia.org/ Thalassemia and sickle cell anemia Hyderabad, 1998 Dr. Suman Jain Yes Volunteer
19 World Without GNE Myopathy (WWGM) http://gne-myopathy.org/ GNE myopathy (GM) Delhi, 2015 Dr. Shilpi Bhattacharya Yes Patient