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About the organization
 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.
Objectives
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 To provide patients and their families with information about the diseases, the latest medical development, community resources and activities.
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To promote emotional support among patients and families, as well as sharing of experiences about treatment, rehabilitation and life.
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To advocate for MPS and other rare genetic diseases in the medical field, and to assist interested parties in research and development of drugs and other therapies.
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To gather the strength of members, reflect their needs to relevant authorities, strive for a reasonable allocation of community resources, and attain equal opportunities in the society.
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Consultants
| Dr. Cheung Chiu Hung Fernando |
Dr. Lam Tak Sum Stephen |
| Dr. Chow Chun Bong |
Dr. Lee Shing Yan Robert |
| Dr. Huen Kwai Fun |
Mr. Steven M. L. Leung (Accountant) |
| Dr. Hui Joannie |
Dr. Poon Wing Kit Grace |
| Ms. Julienne Jen (Lawyer) |
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Note: Names by alphabetical order |
References:
(1)- Mingpao Newspaper, D2, April 28, 1998.
(2)- Apple Daily Newspaper, Charity section, D7, June 29, 1998.
(3)- Apple Daily Newspaper, Charity section, July 17, 1999.
(4)- Apple Daily Newspaper, Charity section, F5, October 21, 1999. |
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