Table 4 A comprehensive list of rare disease organizations and resources that provide patient support [modified from [90]]

1

Alzheimers and Related Disorders Society Of India (ARDSI)

http://ardsi.org/

2

Birth Defects Registry of India

http://www.fcrf.org.in/bdri_abus.asp

3

Down Syndrome Federation India

http://downsyndrome.in/

4

Fragile X Society–India

http://www.fragilex.in/

5

Genetic Alliance

http://www.geneticalliance.org

6

Hemophilia Federation

http://www.hemophilia.in/

7

Indian Rett Syndrome Foundation

www.rettsyndrome.in

8

Indian Association of Muscular Dystrophy

www.iamd.in

9

Indian Prader-Willi Syndrome Association

https://ipwsa.in/

10

Indian Patients Society for Primary Immunodeficiency (IPSPI)

www.ipspiindia.org

11

Indian Organization for Rare Diseases (I-ORD)

http://www.i-ord.org/

12

Indian Society for Primary Immune Deficiency

http://www.ispid.org.in/

13

Lysosomal Storage Disorders Support Society (LSDSS)

www.lsdss.org

14

Metabolic Errors and Rare Diseases (MERD)

http://merdindia.com

15

Muscular Dystrophy Association India

http://mdindia.net/

16

Muscular Dystrophy Foundation India

http://www.mdfindia.org

17

Muskaan (intellectually disabled)

https://muskaanthengo.org/

18

National Thalassemia Welfare Society

http://www.thalassemiaindia.org/

19

Open Platform for Rare Diseases (OPFORD)

https://opford.org/

20

Organization of Rare Disorder India (ORDI)

https://ordindia.org/

21

Pompe Foundation

http://pompeindia.org/

22

Rare Diseases India

http://www.rarediseasesindia.org

23

Retina India

http://retinaindia.blogspot.com/

24

Sjogren’s India

http://www.sjogrensindia.org

25

Society for Hemophilia Care, India

http://www.shcindia.org/

26

Thalassemics India

www.thalassemicsindia.org