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Table 1 Information of patient organizations

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
  1. SOP, standard operation protocol