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A number of our publications are now available as e-books for free download!
香港黏多醣症暨罕有遺傳病互助小組
繁簡Eng. 

 

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News

2018-7-25 to 2018-8-15
"Rare Image" Exhibition

Friends:

Last year, we partnered with the Hong Kong Professional Photographers Network (HKPPN) and staged a "Rare Portraits" Photo Exhibition at the Central Market.

This year, we are staging the "Rare Image" exhibition.

Exhibition Period: 25 July to 15 August
Venue: H6 CONET, G/F, The Center, 99 Queen’s Road Central (Map)

We cordially invite all to come and visit.

Launch ceremony: 29 July (Sunday)
Time: 2:30pm-3:30pm

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)

2016-2-28

"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)

2015-10-12

Come and join the "Invent for Love" Secondary School Students Invention Contest

Dear secondary school principals:

To encourage more youths to learn about rare genetic diseases and care for the patients, HKMPS is organising the "Invent for Love" Secondary School Students Invention Contest. The contest invites Hong Kong's secondary school students to invent assistive tools for the patients to improve their quality of living. The Organiser will host invention workshops and day camps for the shortlisted students. Winners of the contest will receive cash awards.

Please refer to the Rules of the Contest and application form for details.

Hope to have your participation!

Chau Po Yuen
HKMPS Chairperson

2015-5-5

The speeches given by Mrs Ching, President, and Mr Chau, Chairperson, at the 10th anniversary celebration is available for viewing. Click here to read (Chinese only)

2015-5-1

A number of our publications are now available as e-books for free download.
Click here for details.

2015-4-10

International accolades for the video of the Tang Brothers's (MPS Type 2 patients) plea for medical treatment to the government!

Including:

2015-2-9

2015 marks our 10th anniversary! Celebration activities and the 2015 annual general meeting will take place on 1 May (Friday). We are actively planning for the day's activities. Please stay tuned for more details!

2014-12-15

Latest: MPS IV treatment approved by Australia's TGA (Therapeutic Goods Administration)

2014-08-30

We have set up a Facebook page! Visit us here: facebook.com/mpshk

2013-11-11

The video of the Tang Brothers's (MPS Type 2 patients) plea for medical treatment to the government has been uploaded to YouTube, please click here to watch and share (with Chinese and English subtitles).

2013-9-5

The 2012-2013 Auditors' Report is available, you may read it here.

2013-8-24

Phoenix Satellite TV produced a programme on MPS, available for viewing here

2013-7-10

2013's newsclippings have been uploaded, please read them here

2013-4-23

The 2011-2012 Auditors' Report is available, you may read it here.

2013-3-5

Our fifth book "Rare Love" (Chinese only) has been published! It is currently sold in all major bookstores. You may also order it online by using this order form.

2013-2-24

In celebration of the International Rare Disease Day, HKMPS has designed 3 sets of educational resouces for kindergarten, primary and secondary school teaching. Click here for more information.

2012-5-26

The 2010-2011 Auditors' Report is available, you may read it here.

2009-07-28
Two patients with MPS VI began ERT

Others still pending government approval

After years of efforts and hard work, we received good news from HA on May 15, 2009, which was “International MPS Day” and the day after our hosting of the 2009 Asia-Pacific MPS Conference, that the 2 children with MPS VI were approved to use ERT. HA will enter them into a one-year research trial, with the enzyme sponsored by drug company, in hopes of stabilizing their cardiorespiratory functions and preventing their condition from getting worse.

The 2 children have begun receiving their ERT treatment in July, visiting the hospital for intravenous injection of 4 to 5 hours every week.

This is a small step forward by Hong Kong for MPS patients! We still have some journey to go to achieve “one-stop shop” integrated treatment (including diagnosis, assessment, treatment and rehabilitation) for all patients.

As for other patients, for example, 2 out of the 3 patients with MPS type I are suitable for ERT. After our discussions with the drug company that provides the enzyme for MPS I, the 2 patients were promised ERT sponsorship for half a year each. In addition to the help of many kind-hearted donors over these 2 years, we have secured sufficient funds for both of them to receive a full year of ERT.

The enzyme to treat MPS I was the first ERT treatment available to patients, with evident efficacy overseas. The Food and Health Bureau Chief Dr York Chow has acknowledged that MPS is one of over fifty rare genetic lysosomal diseases with actual medical needs. Since the year 2008-09, the Hospital Authority (HA) has also received additional annual recurrent funding of $10 million to provide ERT to patients with rare genetic lysosomal diseases.

Since the 2 children with MPS VI can receive ERT, it only makes sense for the 2 children with MPS I, who are younger and with less severe illness, to receive treatment as soon as possible. ERT can help prevent their health from getting worse or leading to other problems, such as weaker heart and lung functions and rigid joints. Yet, as long as HA does not approve them for using ERT, they cannot begin treatment.

We hope HA will ratify all patients’ therapeutic needs as soon as possible

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

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

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.

You are cordially invited to attend the official Buddies Scheme kick-off ceremony:

Time: 1:30 pm – 2:00 pm (Press Registration)
2:00 pm – 2:45 pm (Kick-off Ceremony)
Venue: Event Hall, UG Floor, Citywalk Phase 1,
1 Yeung Uk Rd, Tsuen Wan, Hong Kong

For details about the “Buddies Scheme”, please click here.

 

 

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