Table of Contents

HK J Paediatr (New Series)
Vol 5. No. 1, 2000

HK J Paediatr (New Series) 2000;5:87

Proceedings of 2nd Hong Kong Medical Genetics Conference

Genetics in the Community

KP Tsang


HK J Paediatr (new series) 2000;5:85-89

Proceedings of 2nd Hong Kong Medical Genetics Conference, Hong Kong Society of Medical Genetics (Selected Abstracts)
15-17 October, 1999

As a minority group in the vulnerable community in Hong Kong, no adequate and specific caring is provided to the people suffering from Retinitis Pigmentosa or other inherited retinal degenerative diseases by the government and medical service authorities in the past time. Patients and their family as well as the general public were not able to understand the disorders because of no appropriate information is provided to them. Founded by a group of patients, and with the support and assistance of enthusiastic ophthalmologists, optometrists, geneticists and other individuals, the Hong Kong Retinitis Pigmentosa Society, a non-profit making patients' mutual help charity organization has started to play its role since March, 1995. A major project pursuing by the HKRPS is the Hong Kong Retinitis Pigmentosa Patients' Register Scheme. With join efforts of the Optometry Department of the Hong Kong Polytechnic University, several opthalmologists, Clinical Genetic Service, Health Department of the SAR, and the HKRPS, we plan to establish a data base consisting of information of clinical characteristics and family hereditary records of all RP patients in Hong Kong. Phase one of the scheme has been commenced in September, 1998. More than 100 patients and their family members are receiving relevant examinations, diagnosis and counselling. The scheme will be extended to more families and digged into its depth including DNA study if necessary funding is obtained. Genetics may not be the exclusive business of the geneticists. It should be an affair in the community. We shall spare more time on the conventional and updating knowledge of genetics in the primary and secondary schools. It is the high time to seriously consider the establishment of comprehensive genetics studies in the universities here in Hong Kong. Public education shall be developed and enhanced in the community jointly by the government authorities, geneticists, and related agencies in the society.

 
 

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