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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