HKARD 2017 World Rare Disease Day Symposium


In order to promote public awareness and care for rare diseases, the European Rare Diseases Organization (EURORDIS) set the last day of February as the "World Rare Disease Day" since 2008.
The Hong Kong Alliance for Rare Diseases (HKARD) also takes this opportunity to hold a seminar every year to invite organizations and families of rare diseases in Hong Kong to exchange, discuss and advocate policies. This year, the Hong Kong Angelman Syndrome Foundation (HKASF) was honored to be one of the supporting institutions of HKARD 2017 World Rare Disease Day Symposium held at The
City University of Hong Kong.

Date : 25-02-2017

Time : 14 : 00 - 17 : 30

Venue : The City University of Hong Kong

Enquiries : / +852 5125 8111

The purpose of the Symposium was to raise awareness and concern on rare diseases in Hong Kong for the ultimate purpose to improve the community support of rare diseases management both in aspects of resources and policy development. Besides the representatives of the rare disease associations, there were patients, family members, doctors, scholars, government officials, representatives of Hospital Authority, representatives of the pharmaceutical research industry that sat in the Symposium. The wonderful and enlightening speech were beneficial to all. HKASF showed its support by collaborating in one of the workshops - the sharing of patient organization.
After the Symposium, we got the promise from HKARD to support the preparation work of the Global AS Registry project which, as the major key job of HKASF this year, we hope to have it implemented as soon as possible. HKASF is the sole accredited institution in the Chinese community to collect AS data. Building this data helps further medical research on this disease.