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 |