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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)
2 Birth Defects Registry of India
3 Down Syndrome Federation India
4 Fragile X Society–India
5 Genetic Alliance
6 Hemophilia Federation
7 Indian Rett Syndrome Foundation
8 Indian Association of Muscular Dystrophy
9 Indian Prader-Willi Syndrome Association
10 Indian Patients Society for Primary Immunodeficiency (IPSPI)
11 Indian Organization for Rare Diseases (I-ORD)
12 Indian Society for Primary Immune Deficiency
13 Lysosomal Storage Disorders Support Society (LSDSS)
14 Metabolic Errors and Rare Diseases (MERD)
15 Muscular Dystrophy Association India
16 Muscular Dystrophy Foundation India
17 Muskaan (intellectually disabled)
18 National Thalassemia Welfare Society
19 Open Platform for Rare Diseases (OPFORD)
20 Organization of Rare Disorder India (ORDI)
21 Pompe Foundation
22 Rare Diseases India
23 Retina India
24 Sjogren’s India
25 Society for Hemophilia Care, India
26 Thalassemics India