From: The urgent need to empower rare disease organizations in China: an interview-based study
Organizations | Disease of interest | On the List of Rare Diseases? | Relationship to a rare disease? | Is the interviewee the founder? | Current members | Total patients in China | Reliable financial resource | Official registration? | Employee? | Office space? | SOP? |
---|---|---|---|---|---|---|---|---|---|---|---|
Anning's Mother PKU Chat Group | Phenylketonuria | Yes | Family | Yes | 1000 | 140,000 | No | No | No | No | No |
MPS I Chinese Patients Community | Mucopolysaccharidosis type I | Yes | Self | Yes | Not sure | Not sure | No | No | No | No | No |
Cushing Syndrome Community | Cushing syndrome | No | Self | Yes | 800 | 4000 | No | No | No | No | Yes |
Nanjing Rare Disease Help Center | Acromegaly | No | No | Yes | 800 | 100,000 | No | Yes | No | No | No |
Usher Syndrome Chat Group | Usher syndrome | No | Self | No | Not sure | 30,000–40,000 | No | No | No | No | No |
Beijing Zhi'ai DMD Help Center | Duchenne muscular dystrophy | Yes | Family | No | 5000 | 70,000 | No | Yes | Yes | No | No |
Sichuan Huntington's Disease Community | Huntington's disease | Yes | Self | No | 600 | 4000–5000 | No | No | No | No | Yes |
Gaucher Disease Patient Club | Gaucher disease | Yes | Self | No | 300 | 400 | No | No | No | No | No |
Body Odor Chat Group | Unidentified diseases that cause body odor | No | Self | Yes | 2000 | 20,000–50,000 | No | No | No | No | No |
Acromegaly Communication Center | Acromegaly | No | Self | Yes | 600 | 100,000 | NO | No | Yes | No | Yes |
Shanghai ALD Mutual Help Group | Adrenoleukodystrophy | Yes | Family | No | 1000 | Not sure | No | No | No | No | No |
CAH & AHC Help Center | Congenital adrenal hyperplasia, adrenal hypoplasia congenita | Yes | Family | Yes | 10,000 | 100,000 | No | No | No | No | No |
SPE Patients Chat Group | Symmetrical progressive erythrokeratoderma | No | Family | No | Not sure | 1000–10,000 | No | No | No | No | No |
VWD Patient Community | Von Willebrand disease | No | Self | Yes | 200 | 160,000 | No | No | No | No | No |
CGL Patient Community | Chronic Granulocytic Leukemia | No | Self | Yes | Not sure | Not sure | No | No | No | No | No |
LCA Patients Club | Leber congenital amaurosis | No | Self | No | 300 | 30,000 | No | No | No | No | Yes |
Shandong Osteogenesis Imperfecta Chat Group | Osteogenesis imperfecta | Yes | Self | No | 600 | Not sure | No | No | No | No | No |
Pompe Patients Help Center | Pompe disease | No | Self | No | 400 | 5000 | No | No | Yes | No | Yes |
LNS-China | Lesch–Nyhan syndrome | No | Family | Yes | 15 | 200 | No | No | Yes | No | No |
Chinese Fabry Patients Club | Fabry disease | Yes | Self | No | 300 | 1000 | No | No | No | No | No |
Zhuo Wei Chang Dao | Dravet syndrome | Yes | Family | Yes | 1000 | 20,000 | No | No | No | No | Yes |
Beijing Zhengyu MPS Disease Center | Mucopolysaccharidoses | Yes | Family | No | 400 | 2000–3000 | No | No | No | Yes | Yes |
MMA Patients Community | Methylmalonic acidemia | Yes | Self | No | 800 | 50,000 | No | No | No | No | No |
Butterfly Baby Help Center | Epidermolysis bullosa | Yes | Self | No | 300 | 2000 | No | Yes | No | No | No |
Chongqing Hemophilia Patients Club | Hemophilia | Yes | Self | No | 3000 | 100,000 | No | No | No | No | Yes |
Seven-Pansy Rare Disease Community | All rare diseases | N/A | No | Yes | 10,000 | 20,000,000 | No | Yes | Yes | No | Yes |
Henan Neurofibromatosis Patients Club | Neurofibromatosis | No | Self | No | 500 | 100,000 | No | No | No | No | Yes |
TSC Patient Communication & Help Center | Tuberous sclerosis complex | Yes | Self | No | 3000 | 100,000 | No | No | No | No | No |