Festschrift: Professor Jenkins

The role of patient advocacy/parent support groups

Judith G Hall

Abstract


Parent support/patient advocacy groups for rare genetic disorders have emerged as an important force. They provide information, encourage research (both by participation in research and by raising money for research), give families and affected family members the opportunity to learn from each other, and open the way for social and intellectual interaction between families, affected individuals, researchers and healthcare providers. New IT technologies increase the opportunities for collaboration and information exchange around the world. These groups have become an important resource for families, genetic counsellors and medical/clinical genetic professionals. 


Author's affiliations

Judith G Hall, Departments of Medical Genetics and Pediatrics, University of British Columbia and BC Children’s Hospital, Vancouver, British Columbia, Canada

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Keywords

advocacy; genetic counselling; clinical genetic services; rare genetic disorders; festschrift; Trefor Jenkins; human genetics

Cite this article

South African Medical Journal 2013;103(12):1020-1022. DOI:10.7196/SAMJ.6976

Article History

Date submitted: 2013-04-18
Date published: 2013-10-11

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