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Our fifth book "Rare Love" (Chinese version) is now available at all major bookshops!
Hong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group
繁簡Eng. 

 

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Our Story

This is a story of a little bean, and a story of a little group of people.

Summer has come.  Beans fall on to the soil in the garden, waiting to grow up.  Just like everyone else, Beanie works hard everyday.  He eats.  He sunbathes.  He exercises.  And he dreams of growing up, as every other bean does.  

But he doesn’t grow much taller….

Beanies

 

…“No growing, life’s ending” is the doctors’ prophecy to him.

This is usually the beginning of the story for Mucopolysaccharidoses (MPS) patients.  Like other rare genetic diseases, this disease is hard to diagnose prior to pregnancy, and medical treatment is extremely costly.  Many patients and parents are exhausted.  Is this a joke on their genes?  Is this a test of resolution imposed by destiny?

They have small bodies, but their dreams are big, and they never give up moving forward.

Foot Print

Please choose from the menu on your left to learn more about MPS, and how you can help.

 

 

News

11 November 2013
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).

 

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

 

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

 

SUPPORT US

Please support us

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

 

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