The role of patient advocacy/parent support groups
JG Hall - South African Medical Journal, 2013 - ajol.info
JG Hall
South African Medical Journal, 2013•ajol.infoParent 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 …
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 …
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.
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