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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