| A | B | C | D | E | ||
|---|---|---|---|---|---|---|
1 | Rare Disease | Primary Nonprofit Organization | Website | Country | Notes | |
2 | Acromegaly | Acromegaly Community | https://www.acromegalycommunity.org | USA | ||
3 | ALS | ALS Association | https://www.als.org | USA | ||
4 | Angelman Syndrome | Angelman Syndrome Foundation | https://www.angelman.org | USA | ||
5 | Batten Disease | Batten Disease Support & Research Association | https://bdsra.org | USA | ||
6 | Cystic Fibrosis | Cystic Fibrosis Foundation | https://www.cff.org | USA | ||
7 | Duchenne Muscular Dystrophy | Parent Project Muscular Dystrophy | https://www.parentprojectmd.org | USA | ||
8 | Ehlers-Danlos Syndromes | The Ehlers-Danlos Society | https://www.ehlers-danlos.com | USA | ||
9 | Fabry Disease | National Fabry Disease Foundation | https://www.fabrydisease.org | USA | ||
10 | Fibrous Dysplasia / McCune-Albright Syndrome | FD/MAS Alliance | https://fdmasalliance.org | USA | ||
11 | Fragile X Syndrome | FRAXA Research Foundation | https://www.fraxa.org | USA | ||
12 | Friedreich's Ataxia | FARA | https://www.curefa.org | USA | ||
13 | Gaucher Disease | National Gaucher Foundation | https://www.gaucherdisease.org | USA | ||
14 | Hemophilia | National Bleeding Disorders Foundation | https://www.bleeding.org | USA | ||
15 | Hereditary Angioedema | US Hereditary Angioedema Association | https://www.haea.org | USA | ||
16 | Huntington's Disease | Huntington's Disease Society of America | https://hdsa.org | USA | ||
17 | Idiopathic Pulmonary Fibrosis | Pulmonary Fibrosis Foundation | https://www.pulmonaryfibrosis.org | USA | ||
18 | Marfan Syndrome | The Marfan Foundation | https://marfan.org | USA | ||
19 | Neurofibromatosis | Children's Tumor Foundation | https://www.ctf.org | USA | ||
20 | Pompe Disease | Acid Maltase Deficiency Association | https://www.amda-pompe.org | USA | ||
21 | Prader-Willi Syndrome | Prader-Willi Syndrome Association USA | https://www.pwsausa.org | USA | ||
22 | Rett Syndrome | International Rett Syndrome Foundation | https://www.rettsyndrome.org | USA | ||
23 | Sickle Cell Disease | Sickle Cell Disease Association of America | https://www.sicklecelldisease.org | USA | ||
24 | Spinal Muscular Atrophy | Cure SMA | https://www.curesma.org | USA | ||
25 | Tuberous Sclerosis Complex | TSC Alliance | https://www.tscalliance.org | USA | ||
26 | Xeroderma Pigmentosum | XP Family Support Group | https://xpfamilysupport.org | USA | ||
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