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香港黏多醣症暨罕有遺傳病互助小組
繁簡Eng. 

 

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About the organization

1998-8-22第一次聚會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

  1. 互助To provide patients and their families with information about the diseases, the latest medical development, community resources and activities.

  2. To promote emotional support among patients and families, as well as sharing of experiences about treatment, rehabilitation and life.

  3. 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.

  4. 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.

Consultants

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

President: Mrs. Ellie Ching

2017-2020 Committee Member

Chairperson Chau Po Yuen
Vice Chairperson Terry Lai
Stephen Ma
Secretary Ken To
Joe Lai
Hon. Treasurer Iris Chan
Wong Big Ngor
Contact Li Shing Kit
Eric Ma
Kelvin Chu
General Admin. Jenny Lai
Aaron Chung

 

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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