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S Afr Med J. 2013 Oct 11;103(12 Suppl 1):1020-2. doi: 10.7196/samj.6976.

The role of patient advocacy/parent support groups.

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Departments of Medical Genetics and Pediatrics, University of British Columbia and BC Children's Hospital, Vancouver, British Columbia, Canada.


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.

[Indexed for MEDLINE]

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