A Step Up for Little People

Patients with rare bone diseases that cause extremely short stature used to struggle alone with the pressure of being different, whether it was losing out on school places or jobs or navigating facilities that were outsized for their needs. A project supported by the KE Fund is helping to ease their path by providing support for patients and their families and promoting greater acceptance by society.

The Little People Care Alliance KE Project is a partnership between HKU and Little People of Hong Kong (LPHK), which represents patients and their families. Professor Danny Chan, the project co-ordinator and an expert in bone disorders from the School of Biomedical Sciences, represents HKU, while LPHK is represented by Serene Chu, whose son has dwarfism (one type of rare bone disease) and who has been motivated in part by the heartache and rejection she experienced simply finding a kindergarten to admit her son.

While the initial aim of the alliance was to bring patients and families together to support each other, Professor Chan said they quickly realised they needed to think a lot more broadly if they wanted to make meaningful improvements to patients' lives.

"Having a foundation is good because it supports patients, but at the end of the day, we wanted to change the mindset of Hong Kong people and the government. This will take a long time, our target is the next generation," he said.

The alliance organised a symposium last year for more than 150 school principals, teachers and students to start raising awareness and getting them to think about how they could make their schools more welcoming to little people.

This was followed up with the publication earlier this year of the booklet "Little but Not Less: Understanding Rare Bone Disorders", which  is aimed at the general public. It provides information on these disorders, personal stories from patients and their parents, and stories of triumph over adversity, such as a patient with dwarfism who became a university researcher and a badminton player who is ranked world’s No. 5 in the Men's Singles short stature group.

The booklet was launched on world Rare Disease Day in February 2016 at an event attended by Dr York Chow, then Equal Opportunities Commission chairman. It will be distributed to all schools in Hong Kong, government bodies and other public organisations, and it has been uploaded to LPHK's website.

Dr Chow spoke at the event and neatly summarised the importance of this initiative: "Only with understanding can we put down prejudice and only with care and acceptance can people with different abilities realise their potential," he said.

Watch the video produced by LPHK for the International Dwarfism Awareness Month 2016.