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Upcoming Activities

2018-2-24
Rare Disease Day 2018

For Rare Disease Day 2018, we will host a documentary screening and sharing session at the Science Park. We will show the micro-films that students of the Chinese University and Shue Yan University made for us and the footage of last year's "Rare Portraits" campaign, where we partnered with members of the Hong Kong Professional Photographers Network to promote rare disease.

In addition to our friends, we have invited members of the Junior Police Call to the event.

Date: February 24 (Saturday)
Time: 2-4pm
Venue: Conference Hall 4-6, 10W, Hong Kong Science Park (near the Charles K Kao Auditorium)
Five minutes by bus 272K from the Chinese University MTR station
Ten minutes by minibus 27 (at Pai Tau Street near Ikea) from the Sha Tin MTR station (alight at the Charles K Kao Auditorium)

2016-5-14
Mrs Ching and Mr Chau's Speeches at the 11th Anniversary Celebration (Chinese only)

Click here to read Mrs Ching and Mr Chau's Speeches at the 11th Anniversary Celebration.(Chinese only)

2016-2-28
"Invent for Love" Exhibition and Awards Presentation Ceremony

Dear Friends,

Happy New Year!

Last year, we organised an "Invent for Love" Secondary School Students Invention Contest, inviting Hong Kong's secondary school students to invent assistive tools for our patients to improve their quality of living.

The contest has ended, and we have selected outstanding works from five schools. We will be hosting an awards presentation ceremony and exhibition of the winning works on 28/2, and you are invited to come!

We will also introduce the mouse designed for us by HKUST's SIGHT team at the event.

In addition, we have teamed up with patient groups from Singapore, Malaysia and other countries and put together a "World Through My Eyes" exhibition. The exhibition will be held alongside the "Invent for Love" events. This is also an event of Rare Disease Day 2016.

Please come to support us!

Date: 28/2 (Sunday)
Time: 2:00pm-5:00pm
Venue: Eaton Hotel Hong Kong

Light refreshments available.

Thank you.

2016-2-28
"World Through My Eyes" Exhibition

A joint exhibition by patient groups from Hong Kong, Singapore, Malaysia, the Philippines, India and Vietnam. An event of Rare Disease Day 2016.

Details:28/2 (Sunday) 2:00-4:30pm Eaton Hotel Hong Kong



(Click to enlarge)

2013-2-8
"Rare Love" Illustration and Comic Competition Awards Presentation Ceremony

Date: 24 February 2013 (Sunday)
Time: 3-4pm
Venue: Auditorium, 1/F, Duke of Windsor Social Service Bldg., 15 Hennessy Road, Wanchai, Hong Kong

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

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

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

PDF 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"

PDF 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.

2009-05-15
International MPS Day

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.

PDF Details
PDF Joint Declaration
PDF Photo Gallery

2009-05-12
4th Annual General Meeting

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.

For details about the Buddies Scheme, please click here for the press release or visit the Buddies Scheme website.

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.

PDF Details
Photo Gallery

 

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Your donation will help with implementation of self-help and mutual aid efforts among our patients. - Details

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