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.
How we began…
In 1998 and 1999, exclusive interviews on local papers about children with Mucopolysaccharidosis (MPS) initiated the connection of our members before the group was formed(1), (2), (3). Parents whose children were also diagnosed with MPS sought out the interviewees and their families through the reporters after reading the newspaper, and met to provide support and share information. One of the reporters contacted the social workers at the Hong Kong Society for Rehabilitation Community Rehabilitation Network (CRN) and arranged for these families to meet.
In October 1999, families of 5 patients with MPS had our first gathering(4) at the Wang Tau Home Estate of the Hong Kong Society for Rehabilitation Community Rehabilitation Network (CRN), which was also reported by a local newspaper. Since then, our support group has grown with the help of social workers in the CRN. We became a registered charity organization on March 23, 2005. (Inland Revenue Department file number: 91/8375)
Besides patients with MPS, we also welcome patients with other rare genetic diseases to join us.
- To connect patients and families with rare diseases in Hong Kong, enabling them to share their experiences of treatment, rehabilitation and life.
- To collaborate actively with the medical and other sectors and assist in research and other related activities to find and improve therapy options for rare diseases.
- To work with patients and their families to secure adequate and reasonable allocation of social resources for patients with rare diseases.
- To actively interact with the outside world through appropriate channels and to create awareness and understanding of rare diseases and patients in the community.
- To organise activities and create platforms for patients and their families to develop their talents and actively participate in and contribute to society.
- To provide financial assistance to improve the quality of life of patients.
- Dr. David Chan Kam Hung
- Dr. Chan Kwai Yu, Winnie
- Dr. Cheung Chiu Hung, Fernando
- Dr. Chong Shuk Ching, Josephine
- Dr. Chow Chi Kwan, Jasmine
- Dr. Chow Chun Bong
- Dr. Chung Hon Yin, Brian
- Dr. Huen Kwai Fun
- Dr. Joannie Hui
- Ms. Julienne Jen (Lawyer)
- Dr. Kwok Mei Kwun, Anne
- Dr. Lam Tak Sum, Stephen
- Dr. Lee Shing Yan, Robert
- Mr. Steven M. L. Leung (Accountant)
- Dr. Poon Wing Kit, Grace
- Dr. Sheng Bun
Note: Names by alphabetical order