Our Voices Raised -- Submissions presented to the HKSAR Chief Executive & Financial Secretary
December 9, 2014
Our Position Paper was submitted for Government’s consideration, prior to the 2015 Policy Address and Budget Plan of Hong Kong.
We urge the Government to clearly define rare disease, establish a rare disease registry, strengthen rare disease genetic specialty service and related training, formulate rare-disease specific health care and social support policy and services, and set up a Rare Disease Centre in the new Children’s Hospital.
> Details (in Chinese)
HKARD will collaborate with various stakeholders, including patients and their families, alliance, medical practitioners and overseas stakeholders for policy advocacy. The Alliance will soon initiate meetings with various Government departments such as Food and Health Bureau, Labour and Welfare Bureau, Hospital Authority, Department of Health, Equal Opportunities Commission, to reflect patients’ needs, and advocate for better support policies in the aspects of medical, rehabilitation, education, social welfare, employment and social participation.
Last but not the least, we shall launch public education activities in the community to promote the understanding and assistance towards patients and carers, in hope for a fulfilling life for the patients with the help from the Government, related organisations and the general public.