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

From: Genomics of rare genetic diseases—experiences from India

S. no. Organizations Websites
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