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 |