2011年7月20日
誠邀出席《罕有道路》新書發佈會

親愛的罕有病之友：

您好！我們第4本書《罕有道路》會在本月出版！這本書由10位罕有病患者分享他們的心路歷程和理想，更榮幸獲得特首夫人曾鮑笑薇女士和本會顧問周鎮邦醫生為我們撰寫序。

為感謝您們對我們的支持，特意來函邀請您出席《罕有道路》的新書發佈會。

我們將參與香港貿發局香港書展2011－新書發佈會，詳情如下：

日期：2011年7月20日

時間：下午2時至2時45分

地點：香港會議展覽中心　展覽廳3E　活動區

我們誠邀您屆時撥冗出席《罕有道路》新書發佈會，與病友一起向大家展示他們抗病的心路歷程和理想，繼續支持一眾病友踏過艱難的道路，步向美好的未來，迎接豐碩的人生。

祝

身體健康，生活愉快

程馬璦莉
香港黏多醣症暨罕有遺傳病互助小組主席

馬安達
香港黏多醣症暨罕有遺傳病互助小組副主席

《罕有道路》稍後會在各大書局發售

2011-7-20
Our sincere thanks to Hong Kong Disneyland for sporsoring 132 of our members and families to have fun at the park on May 1 and 2, 2011.

2011-5-1
Our sincere thanks to Hong Kong Disneyland for sporsoring 132 of our members and families to have fun at the park on May 1 and 2, 2011.

2011-4-7
HKMPS Website Design Competition 2011 calls for entries

Competition details (Chinese only)

2011-3-11
The First Hong Kong Rare Children Award: Participant and Special Guest Information

Participant Information (Chinese only)
Special Guest Information (Chinese only)

2011-2-27
The First Hong Kong Rare Children Award Presentation Ceremony

Invitation Letter (Chinese only)

2011-1-23
The First Hong Kong Rare Children Award

Aims	The aim of the award is to inspire and arouse public awareness to rare diseases, through showcasing the positive energy and values displayed by the recipients of the Award. The Award also encourages people to explore and enjoy their own and other people's "rare" strengths and skills, and develop positive values for the society.
Deadline	21 January 2011
Information for participants	Factsheet (Chinese only) Nomination Form (Chinese only)
Eligibility	Children aged 12 years or below
Organiser	The Hong Kong Mucupolysaccharidoses and Rare Genetic Diseases Mutual Aid Group (HKMPS)
Contact	(Tel) 8108 6202 (Mr. Cheung) (Email) hkmps@bbluesky.com (Fax) 2527 4811

2010-12-27
Christmas Activity - Day trip to Ma Wan's "Noah's Ark"

The Boy's Brigade will play games with us in the morning. In the afternoon we will tour the Ark.

2010-11-30
We have been invited to the 9th Asia Pacific Conference on Human Genetics to introduce our group. The conference is organised by the Hong Kong Society of Medical Genetics.

2010-6-23 to 2010-6-27
International MPS Meeting - Adelaide Australia

2010-5-15
International MPS Day

2010-2-27 to 2010-2-28
Charity HKMPS Welcomes All in Hong Kong to Play at the First-ever "Songs of Rare Disease Families"

Details

2010-2-28
World Rare Disease Day

2009-12-26
Christmas Party

2009-10-26
Chong Yeung Festival Day Trip

26 October 2009 (Monday) is a public holiday. All members and consultants of HKMPS are invited to join this day trip to the Inspiration Lake Recreation Centre, which is in Penny's Bay, Lantau Island, next to Disneyland.

2009-05-12 to 2009-05-14
2009 Asia-Pacific MPS Conference

Our Right To Treatment  

We hosted a conference in May, with invitations to sister organizations in the Asia Pacific region to share experience on their process about advocating for medical treatment for their rare genetic diseases. We also invited local patient groups to attend.

Details
Joint Declaration
Photo Gallery

2009-04-13
Scouts Day Camp

13 April 2009 (Monday) is Easter holiday. We will go to Tai Tam Scouts Centre for a day of experience as boy and girl scouts. Led by the Hong Kong Island Regional Scouting Unit, we will have the opportunity to lie down in camps, use branches to roast BBQ pork and chicken wings, as well as to visit the Tai Tam Reservoir and pretend to be a movie star (since a lot of them shoot their movie scenes there).

2009-03-08 (Sunday)
Buddies Scheme Kick-off Ceremony

The Kick-off Ceremony at 2pm on Sunday 8 March 2009 (Sunday) at Citywalk in Tsuen Wan marks the official launch of our Buddies Scheme.

The Buddies Scheme is the first program ever in Hong Kong where you can pair-up one-on-one with patients with rare genetic diseases.  The scheme aims to connect MPS patients and the public at large as buddies, gain financial support from the community to cover over the million-dollar medication cost per patient each year, and raise awareness to rare genetic diseases as well as the needs of patients who live with such diseases.  It is co-organized by our group and final year students majoring in English for Professional Communication at the City University of Hong Kong.

Everyone is welcome to join the Buddies Scheme and be buddies of patients with rare genetic diseases.

2009-03-06 to 2009-03-15
Photo Exhibition --- “I’m not a Diving Bell, not a Butterfly. I’m your world”

Some of our MPS patients and families have previously completed a photography class. This exhibition showcases their photos about living with rare genetic diseases.

Details
Photo Gallery