Rare Disease Patient Groups in Hong Kong
Lifewire Foundation Limited
護‧聯網慈善基金
Founded in 2014 by Chun Wo Development Holdings Limited, Lifewire brings together patients, charities, donors, and medical experts into a tightly-knit community to provide a channel for those in need to receive help.
Neuromyelitis Optica
香港視神經脊髓炎協會
The Hong Kong Neuromyelitis Optica (NMO) Association is a mutual support organization established specifically for NMO patients and their families in Hong Kong. It was founded on November 22, 2021, and became a tax-exempt charitable organization on June 29, 2023. The association is dedicated to providing the latest medical information on NMO, enhancing patients' and caregivers' medical knowledge, caring for the mental health of patients and caregivers, connecting patients to build strength and support each other, and raising public awareness about rare diseases and understanding of NMO.
Hong Kong Leiomyosareoma Foundation 香港平滑肌肉瘤基金會
Leiomyosarcoma is a rare cancer. Through this page, we hope to connect with patients and caregivers in Hong Kong, allowing everyone to share information and support one another. We also aim to increase awareness about this disease among the broader public.
The Hong Kong HAE Patient Group
遺傳性血管性水腫病人組織 (香港)
Primary Immunodeficiency League
勉逆歷
The Hong Kong HAE Patient Group (“HAE hk”) has been formed in 2019 to support patients with hereditary angioedema (“HAE”) and their families to create awareness, provide education, and gain access to modern treatments so that HAE patients can enjoy a higher quality of life. hae hk aims to achieve optimal standards of care and treatment for all people affected by HAE living in Hong Kong so that they too can live a fulfilled and higher quality of life.
The Primary Immunodeficiency League is a non-profit organization for patients and their families. We are dedicated to creating a platform for patients and their families to connect, share experiences, and support each other. Through this platform, we aim to raise awareness and understanding of Primary Immunodeficiency (PID) among the public and the medical community, enabling early diagnosis and appropriate treatment for those in need. Through unity, we hope to advocate for better treatment options for PID patients and promote medical research on PID.
Alstrom Syndrome Greater China Association
綜合症大中華協會
The Alstrom Syndrome Greater China Association consists of families with patients from Mainland China, Hong Kong, Macau, and Taiwan. Compared to other Western countries, the proportion of patients in the Greater China region is significantly underestimated, and most of the identified cases are children. We hope to organize and identify more patients, gather more cases, and attract greater attention from the medical community and pharmaceutical companies, thereby providing more support to patient families.
Uveitis Fellows
與虹同行
This is Hong Kong's first mutual support organization specifically for individuals affected by iritis/uveitis. Our aim is to encourage everyone to journey together through the challenges, using empathy to substitute for vision. By helping others and helping ourselves, we strive to empower those affected to face their conditions with a positive and proactive attitude.
Primarily advocates for the medical rights of patients in Hong Kong with Paroxysmal Nocturnal Hemoglobinuria (PNH).
Systemic Vasculitis Mutual Support Group
系統性血管炎互助小組
Hong Kong Wilson's Disease Association
香港威爾遜氏症協會
The Hong Kong Wilson's Disease Association is a patient-led organization that aims to unite all Wilson's disease patients and their families in Hong Kong through events and gatherings. It seeks to provide mutual support and advocate for patient rights.
Hong Kong Neurofibromatosis Association
香港神經纖維瘤協會
Originally formed by several patients, the association completed its registration on January 18, 2016. Neurofibromatosis can affect appearance (such as café-au-lait spots and various tumors) and even impact different organs, but the condition varies from person to person. The association aims to enhance society's understanding and acceptance of "neurofibromatosis."
The Hong Kong Association Of Myasthenia Gravis
香港肌無力協會
Established in September 2013, the association is formed by a group of patients with Myasthenia Gravis. The association hopes to raise awareness about the condition and to encourage others not to treat any long-term patients with prejudice.
Families of SMA (Spinal Muscular Atrophy
脊髓肌肉萎縮症慈善基金會
To help in the relief of hardship and suffering of patients afflicted with Spinal Muscular Atrophy (SMA) and their family members
Retina Hong Kong
香港視網膜病變協會
Established in 1998 by professionals from various fields and parents of children with Spinal Muscular Atrophy (SMA), this organization is dedicated to helping SMA patients and their families alleviate the difficulties and pain caused by the disease.
Hong Kong Spinocerebellar Ataxia Association
香港小腦萎縮症協會
Established in April 2007, this non-profit self-help charity is designed for individuals with cerebellar atrophy and their families. Upholding the spirit of mutual support, it encourages members to live life to the fullest. The association is currently supported by the Hong Kong Society for Rehabilitation's Community Rehabilitation Network and the Christian Evangelical Voice Fellowship.
Little People of Hong Kong
小而同 - 罕有骨骼疾病基金會
People with physical differences caused by rare bone diseases deserve the same rights and opportunities to live a meaningful life and become a valuable member of society
Hong Kong Angelman Syndrome Foundation
香港天使綜合症基金會 (HKASF)
The Hong Kong Angelman Syndrome Foundation, spontaneously established by a family with a patient in June 2015, is a non-profit organization in Hong Kong. It became a recognized charity on January 7, 2016. The foundation aims to create a bilingual platform to support Angelman Syndrome families in China, Hong Kong, and Taiwan by sharing treatments and training. It also organizes regular activities and educational seminars to unite these families, encourage mutual support, and raise societal awareness of Angelman Syndrome.
Tuberous Sclerosis Complex Association of
Hong Kong
香港結節性硬化症協會
Our Association, made up of TSC patients and their family members, was founded in May 2015. Our aim is to promote mutual support among ourselves and to win community support by fostering public understanding of the little-known disorder of TSC.While we operate in Hong Kong, we have also been joining awareness efforts in mainland China as well as Taiwan.
Hong Kong Mucopolysaccharidoses &
Rare Genetic Diseases Mutual Aid Group
香港黏多醣症暨罕有遺傳病互助小組
Our support group is formed by people and families with Mucopolysaccharidoses and other rare genetic diseases, with an aim to support and encourage patients and families suffering from these diseases.
Hong Kong Neuro-Muscular Disease Association
香港肌健協會
The Hong Kong Neuromuscular Disease Association is a patient support organization for individuals with neuromuscular diseases and their families. Originally a self-help group under the Community Rehabilitation Network of the Hong Kong Society for Rehabilitation, it was established in 1998 and officially registered as a legal society and tax-exempt charity in 1999. It later registered as a limited company in 2012.
Hong Kong Rett Syndrome Association
香港雷特氏症協會
Hong Kong Rett Syndrome Association is a charitable organization. It was officially registered as an independent society and a charity recognized by the Hong Kong government on August 7, 2013.
The establishment of the association aim to
1. promote the self-help spirit of families with member suffering from Rett Syndrome
2. Promote relevant community education activities to enable the public to correctly understand the knowledge of Rett's syndrome and it's impact on patients;
3. Support activities to promote diagnosis, treatment and rehabilitation of Rett's disease.
The Hong Kong Society for Rehabilitation (HKSR)
香港復康會
Established in 1959, The Hong Kong Society for Rehabilitation (HKSR) is the pioneer in rehabilitation services in Hong Kong, and is also the longest-standing charity in Hong Kong that specialises in rehabilitation. After years of development, The Hong Kong Society for Rehabilitation now provides one-stop services for persons in need, ranging from rehabilitation, health management, accessible transport and travel, supported employment and elderly care services, to allow persons with disabilities and chronic illnesses to restore their potential and participate in the community, living a special fulfilling life with dignity. The Society has over 30 service units in Hong Kong and Mainland China with an annual attendance exceeding 1.3 million.
The Little Life Warrior Society
生命小戰士會
The Hong Kong Society of Neuromuscular Diseases Limited
香港神經肌肉疾病學會
Hand in Hand Association
牽手同行協會
Hong Kong Marfan Syndrome Association
The Little Life Warrior Society (LLWS) is a childhood cancer mutual-support organisation aiming to improve the services for and welfare of children cancer patients, children patients having undergone bone marrow transplant and suffering from severe blood diseases.
The Hong Kong Society of Neuromuscular Diseases Limited was established on March 25, 2015, to promote the development of medical professionals and public education on neuromuscular diseases to pay attention to the health of this particular patient group in Hong Kong. We operate in a non-profit manner.
The Society also encourages the multi-disciplinary research of neuromuscular disorders with the goal of developing more effective interventions and enhancing the function and quality of life of patients. We operate in a non-profit manner. Our board members come from different specialties, including doctors from the specialties of paediatric neurology, adult neurology and pathology, as well as allied health professionals.
Hand in Hand, we want to provide a platform for children with congenital upper limb differences, together with their parents in Hong Kong, to grow together and support each other. We strive to build productive relationships and make a positive impact with all of our pursuits. At the same time, we wish to share useful resources from professionals in Hong Kong and similar support groups around the world.
Patients and families began meeting regularly in June 2002 to share experiences and support each other. They increased awareness of Marfan syndrome through lectures, brochures, media interviews, a website, and patient visits. In August 2008, the association was officially registered as a non-profit patient support organization, supported by an advisory group of healthcare workers, social workers, and professionals. The executive committee members are volunteers from the patient community.
Systemic Vasculitis Mutual Support Group
系統性血管炎互助小組
From 2000 to 2010, there were 11-15 cases per million people in Hong Kong. Although 80% of the patients are female, ages range from 7 to 73. Thrombosis is often a cause of death or disability.
If you are also a patient with this rare disease, we hope you will join this group so that we can support and encourage each other. Let's spread information about vasculitis and raise awareness among Hong Kong's medical community and the public!
Hong Kong Wilson's Disease Association
香港威爾遜氏症協會
The Hong Kong Wilson's Disease Association is a patient-initiated organization dedicated to uniting patients and their families. It provides a platform for them to share treatment experiences and the latest developments.Promote public education and awareness of Wilson's Disease to increase understanding and support for patients and their families. Communicate and collaborate with Wilson's Disease patients, academic, and medical organizations worldwide.