Spanios | Rare should not mean hard to find

China-Dolls Center for Rare Disorders (CCRD)

Patient Group

China-Dolls Center for Rare Disorders (CCRD) is a patient/support organization lead related to osteogenesis imperfecta (OI), identified in Gene Jianghu’s 2023 patient organization directory. The Chine...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

010-63458713

info@chinadolls.org.cn

http://www.chinadolls.org.cn

Jinzhou China-Dolls Charity Association

Patient Group

Jinzhou China-Dolls Charity Association is a patient/support organization lead related to osteogenesis imperfecta, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source ...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

https://jzcww.wohenok.com/

LAM China

Patient Group

LAM China is a patient/support organization lead related to lymphangioleiomyomatosis (LAM), identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image includes an OCR-d...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

01083545711

lam_org@sina.com

http://www.lamchina.com.cn/index.html

CMT Care Center

Patient Group

CMT Care Center is a patient/support organization lead related to Charcot-Marie-Tooth disease (CMT), identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image includes...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

cmt@cmtchina.org

http://www.cmtchina.org/

Hyacinth Huntington Disease Care

Patient Group

Hyacinth Huntington Disease Care is a patient/support organization lead related to Huntington disease, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image includ...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

15982091701

cao@hdcare.org.cn

http://www.hdcare.org.cn/

FSHD-China Patient Support Group

Patient Group

FSHD-China Patient Support Group is a patient/support organization lead related to facioscapulohumeral muscular dystrophy (FSHD), identified in Gene Jianghu’s 2023 patient organization directory. The ...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

13206865756

fshd_china@163.com

http://www.fshd-china.org/

Tianjin Hezhong Rare Disease Care and Aid Center

Patient Group

Tianjin Hezhong Rare Disease Care and Aid Center is a patient/support organization lead related to Klinefelter syndrome, Kallmann syndrome, idiopathic hypogonadotropic hypogonadism and related sex-dev...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

022-60466328

tjhzxxy47gland@sina.com

http://www.xxy47chirl

Old K Home

Patient Group

Old K Home is a patient/support organization lead related to Kallmann syndrome, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image includes an OCR-derived organ...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

15600115813

kallmann@163.com

Moon Child Home

Patient Group

Moon Child Home is a patient/support organization lead related to albinism, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image includes an OCR-derived organizat...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

029-81940112

info@albinism.org.cn

https://albinism.org.cn/

Anan Rett Syndrome Rare Disease Institute

Patient Group

Anan Rett Syndrome Rare Disease Institute is a patient/support organization lead related to Rett syndrome, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image in...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

tam@rscri.org

http://www.rscri.org/

DEBRA China / Butterfly Baby Care Center

Patient Group

DEBRA China / Butterfly Baby Care Center is a patient/support organization lead related to hereditary epidermolysis bullosa, identified in Gene Jianghu’s 2023 patient organization directory. The Chine...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

13918503042

debra_china@163.com

http://www.debra.org.cn

Aili Myasthenia Gravis Care Center

Patient Group

Aili Myasthenia Gravis Care Center is a patient/support organization lead related to myasthenia gravis, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image inclu...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

djb@ailimg.com

http://www.ailimg.org/

China Alport Syndrome Family Association

Patient Group

China Alport Syndrome Family Association is a patient/support organization lead related to Alport syndrome, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image i...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

alport_cn@126.com

http://www.alport.cn/

MS and NMO Patient Association

Patient Group

MS and NMO Patient Association is a patient/support organization lead related to multiple sclerosis and neuromyelitis optica, identified in Gene Jianghu’s 2023 patient organization directory. The Chin...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

https://www.mszj.com/portal.php

Multiple Sclerosis Home

Patient Group

Multiple Sclerosis Home is a patient/support organization lead related to multiple sclerosis and neuromyelitis optica, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese sou...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

https://app.mszj.com//homePage

NMO Shanghai Home

Patient Group

NMO Shanghai Home is a patient/support organization lead related to neuromyelitis optica, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image includes an OCR-der...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

NMO Chengdu Home

Patient Group

NMO Chengdu Home is a patient/support organization lead related to neuromyelitis optica, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image includes an OCR-deri...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

NMO Care Center

Patient Group

NMO Care Center is a patient/support organization lead related to neuromyelitis optica, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image includes an OCR-deriv...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

PNH Patient Home

Patient Group

PNH Patient Home is a patient/support organization lead related to paroxysmal nocturnal hemoglobinuria (PNH), identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

http://www.pnhchina.org

Narcolepsy Mutual Aid Alliance

Patient Group

Narcolepsy Mutual Aid Alliance is a patient/support organization lead related to narcolepsy, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image includes an OCR-...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

86-10-67500717

public@cord.org.cn

http://www.narcolepsychina.org.cn/

CAH & AHC Mutual Aid Center

Patient Group

CAH & AHC Mutual Aid Center is a patient/support organization lead related to congenital adrenal hyperplasia and congenital adrenal hypoplasia, identified in Gene Jianghu’s 2023 patient organization d...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

CAH Mutual Aid Home

Patient Group

CAH Mutual Aid Home is a patient/support organization lead related to congenital adrenal hyperplasia (CAH), identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image i...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

Beijing Kangxin Marfan Syndrome Care Center

Patient Group

Beijing Kangxin Marfan Syndrome Care Center is a patient/support organization lead related to Marfan syndrome, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source imag...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

Inflammatory Myofibroblastic Tumor Home

Patient Group

Inflammatory Myofibroblastic Tumor Home is a patient/support organization lead related to inflammatory myofibroblastic tumor, identified in Gene Jianghu’s 2023 patient organization directory. The Chin...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

China Fabry Patient Association

Patient Group

China Fabry Patient Association is a patient/support organization lead related to Fabry disease, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image includes an ...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

Pompe Rare Disease Care Center

Patient Group

Pompe Rare Disease Care Center is a patient/support organization lead related to Pompe disease / glycogen storage disease type II, identified in Gene Jianghu’s 2023 patient organization directory. The...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

public@pompe.org.cn

https://www.pompe.org.cn

Hemophilia Home Beijing

Patient Group

Hemophilia Home Beijing is a patient/support organization lead related to hemophilia, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image includes an OCR-derived...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

010-59425987

hhc@xueyou.org

http://web.bjxueyou.cn/index.aspx

Tianjin Youai Rare Disease Care Service Center

Patient Group

Tianjin Youai Rare Disease Care Service Center is a patient/support organization lead related to hemophilia, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image ...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

18622027181；022-24147728

wanglx@yajy.org

Heilongjiang Hemophilia Home

Patient Group

Heilongjiang Hemophilia Home is a patient/support organization lead related to hemophilia, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image includes an OCR-de...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

15946523979

http://www.hljxyzj.com/

Beijing Zhengyu MPS Rare Disease Care Center

Patient Group

Beijing Zhengyu MPS Rare Disease Care Center is a patient/support organization lead related to mucopolysaccharidosis, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese sour...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

Neurofibromatosis Bubble Home

Patient Group

Neurofibromatosis Bubble Home is a patient/support organization lead related to neurofibromatosis, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image includes a...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

Wilson Disease Copper Dolls Care Center

Patient Group

Wilson Disease Copper Dolls Care Center is a patient/support organization lead related to Wilson disease / hepatolenticular degeneration, identified in Gene Jianghu’s 2023 patient organization directo...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

wilson-china@wilson-china.org.cn

Tongxin Wilson Disease Information Service Center

Patient Group

Tongxin Wilson Disease Information Service Center is a patient/support organization lead related to Wilson disease / hepatolenticular degeneration, identified in Gene Jianghu’s 2023 patient organizati...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

Beijing Dongfang Siyu ALS Care Center

Patient Group

Beijing Dongfang Siyu ALS Care Center is a patient/support organization lead related to amyotrophic lateral sclerosis (ALS), identified in Gene Jianghu’s 2023 patient organization directory. The Chine...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

010-59473804

als@jiandongren.org

http://www.jiandongren.org

Shanghai Pudong Dandelion ALS Care Center

Patient Group

Shanghai Pudong Dandelion ALS Care Center is a patient/support organization lead related to amyotrophic lateral sclerosis (ALS), identified in Gene Jianghu’s 2023 patient organization directory. The C...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

alsshanghai@126.com

http://www.alshome.cn

China Gaucher Patient Association

Patient Group

China Gaucher Patient Association is a patient/support organization lead related to Gaucher disease, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image includes...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

13552701892

http://www.gaucherchina.com

Peutz-Jeghers Syndrome Care Center

Patient Group

Peutz-Jeghers Syndrome Care Center is a patient/support organization lead related to Peutz-Jeghers syndrome, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image ...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

1.3m Vision Achondroplasia Patient Group

Patient Group

1.3m Vision Achondroplasia Patient Group is a patient/support organization lead related to achondroplasia, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image in...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

China Niemann-Pick Care Center

Patient Group

China Niemann-Pick Care Center is a patient/support organization lead related to Niemann-Pick disease, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image includ...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

13884680368

Pituitary Tumor GH Patient Group

Patient Group

Pituitary Tumor GH Patient Group is a patient/support organization lead related to acromegaly / pituitary GH-related disease, identified in Gene Jianghu’s 2023 patient organization directory. The Chin...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

capawapo@qq.com

https://capa.wohenok.com/

Transthyretin Amyloidosis Patient Group

Patient Group

Transthyretin Amyloidosis Patient Group is a patient/support organization lead related to transthyretin amyloidosis, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese sourc...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

MMA Hope Home

Patient Group

MMA Hope Home is a patient/support organization lead related to methylmalonic acidemia, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image includes an OCR-deriv...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

MMA and PA Home

Patient Group

MMA and PA Home is a patient/support organization lead related to methylmalonic acidemia and propionic acidemia, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source im...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

PID Jiayou Baby Care Center

Patient Group

PID Jiayou Baby Care Center is a patient/support organization lead related to primary immunodeficiency (PID), identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

http://www.chinapid.org.cn

Beijing Daai Tianshi PKU Rare Disease Care Center

Patient Group

Beijing Daai Tianshi PKU Rare Disease Care Center is a patient/support organization lead related to phenylketonuria (PKU), identified in Gene Jianghu’s 2023 patient organization directory. The Chinese...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

http://www.pkuunion.org/

Beijing iSEEK Pulmonary Hypertension Care Center

Patient Group

Beijing iSEEK Pulmonary Hypertension Care Center is a patient/support organization lead related to pulmonary arterial hypertension, identified in Gene Jianghu’s 2023 patient organization directory. Th...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

400-7788-120

http://www.iseek.org.cn/

PAH China Patient Alliance

Patient Group

PAH China Patient Alliance is a patient/support organization lead related to pulmonary arterial hypertension, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

86-10-67500717

public@cord.org.cn

Tianjin PAH Together Rare Disease Patient Aid Center

Patient Group

Tianjin PAH Together Rare Disease Patient Aid Center is a patient/support organization lead related to pulmonary arterial hypertension, identified in Gene Jianghu’s 2023 patient organization directory...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

pahchina@163.com

Glycogen Storage Disease Care Center

Patient Group

Glycogen Storage Disease Care Center is a patient/support organization lead related to glycogen storage disease, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source im...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

agsdcn@qq.com

http://www.agsd.org.cn

Alagille Angel Baby Care Home

Patient Group

Alagille Angel Baby Care Home is a patient/support organization lead related to Alagille syndrome, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image includes a...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

HiHAE Hereditary Angioedema Care Center

Patient Group

HiHAE Hereditary Angioedema Care Center is a patient/support organization lead related to hereditary angioedema, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source im...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

Light Chaser Leber Care Center

Patient Group

Light Chaser Leber Care Center is a patient/support organization lead related to Leber hereditary optic neuropathy, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

lilimeng@cord.org.cn

Angel Coral FOP Care Home

Patient Group

Angel Coral FOP Care Home is a patient/support organization lead related to fibrodysplasia ossificans progressiva (FOP), identified in Gene Jianghu’s 2023 patient organization directory. The Chinese s...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

fop-cn@qq.com

Pemphigus Home

Patient Group

Pemphigus Home is a patient/support organization lead related to pemphigus / autoimmune blistering disease, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image i...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

Guli FD/MAS Care Center

Patient Group

Guli FD/MAS Care Center is a patient/support organization lead related to fibrous dysplasia / McCune-Albright syndrome, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese so...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

Deep Breath for Love IPF Care Center

Patient Group

Deep Breath for Love IPF Care Center is a patient/support organization lead related to idiopathic pulmonary fibrosis (IPF), identified in Gene Jianghu’s 2023 patient organization directory. The Chines...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

0571-26271523

wen.wang@cord.org.cn

aHUS China Home

Patient Group

aHUS China Home is a patient/support organization lead related to atypical hemolytic uremic syndrome, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese source image include...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

Hypophosphatemic Rickets Patient Care Home

Patient Group

Hypophosphatemic Rickets Patient Care Home is a patient/support organization lead related to hypophosphatemic rickets, identified in Gene Jianghu’s 2023 patient organization directory. The Chinese sou...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

Demyelinating Disease Patient Home

Patient Group

Demyelinating Disease Patient Home is a patient/support organization lead related to multiple sclerosis, neuromyelitis optica spectrum disorders and related demyelinating diseases, identified in Gene ...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

4000408772

Yimi Yangguang Infantile Spasms Patient Group

Patient Group

Yimi Yangguang Infantile Spasms Patient Group is a patient/support organization lead related to infantile spasms and pediatric refractory epilepsy, identified in Gene Jianghu’s 2023 patient organizati...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

Antenna Baby Mitochondrial Encephalomyopathy Care Center

Patient Group

Antenna Baby Mitochondrial Encephalomyopathy Care Center is a patient/support organization lead related to mitochondrial encephalomyopathy, identified in Gene Jianghu’s 2023 patient organization direc...

Services:OCR-derived details: Public contact fields shown on this page were extracted from the Chinese source image when readable. The fuller source-language organization summary is maintained in the Chinese locale to avoid over-translating uncertain OCR text.Source and risk note: Source: Gene Jianghu WeChat article “Revised | China Rare Disease Patient Organization Directory (2023)” (https://mp.weixin.qq.com/s/C-KAD5l2GUlNpwruGesRHQ). This entry was organized from a 2023 public post and OCR output for navigation only. Organization status, contact details, service scope, and aid eligibility may change; Spanios does not endorse the organization or guarantee contactability or aid. Verify through the organization’s latest official channels.

Rare Disease Support Groups

China-Dolls Center for Rare Disorders (CCRD)

Jinzhou China-Dolls Charity Association

LAM China

CMT Care Center

Hyacinth Huntington Disease Care

FSHD-China Patient Support Group

Tianjin Hezhong Rare Disease Care and Aid Center

Old K Home

Moon Child Home

Anan Rett Syndrome Rare Disease Institute

DEBRA China / Butterfly Baby Care Center

Aili Myasthenia Gravis Care Center

China Alport Syndrome Family Association

MS and NMO Patient Association

Multiple Sclerosis Home

NMO Shanghai Home

NMO Chengdu Home

NMO Care Center

PNH Patient Home

Narcolepsy Mutual Aid Alliance

CAH & AHC Mutual Aid Center

CAH Mutual Aid Home

Beijing Kangxin Marfan Syndrome Care Center

Inflammatory Myofibroblastic Tumor Home

China Fabry Patient Association

Pompe Rare Disease Care Center

Hemophilia Home Beijing

Tianjin Youai Rare Disease Care Service Center

Heilongjiang Hemophilia Home

Beijing Zhengyu MPS Rare Disease Care Center

Neurofibromatosis Bubble Home

Wilson Disease Copper Dolls Care Center

Tongxin Wilson Disease Information Service Center

Beijing Dongfang Siyu ALS Care Center

Shanghai Pudong Dandelion ALS Care Center

China Gaucher Patient Association

Peutz-Jeghers Syndrome Care Center

1.3m Vision Achondroplasia Patient Group

China Niemann-Pick Care Center

Pituitary Tumor GH Patient Group

Transthyretin Amyloidosis Patient Group

MMA Hope Home

MMA and PA Home

PID Jiayou Baby Care Center

Beijing Daai Tianshi PKU Rare Disease Care Center

Beijing iSEEK Pulmonary Hypertension Care Center

PAH China Patient Alliance

Tianjin PAH Together Rare Disease Patient Aid Center

Glycogen Storage Disease Care Center

Alagille Angel Baby Care Home

HiHAE Hereditary Angioedema Care Center

Light Chaser Leber Care Center

Angel Coral FOP Care Home

Pemphigus Home

Guli FD/MAS Care Center

Deep Breath for Love IPF Care Center

aHUS China Home

Hypophosphatemic Rickets Patient Care Home

Demyelinating Disease Patient Home

Yimi Yangguang Infantile Spasms Patient Group

Antenna Baby Mitochondrial Encephalomyopathy Care Center