Parent support groups play an important role in a variety of
capacities for patients, families, healthcare professionals and researchers.
(REF: J G Hall. The role of patient advocacy/parent support
group. South African Medical Journal Vol
103(12):1020-1022, Dec.2013. http://www.samj.org.za/index.php/samj/article/view/6976/5581
The Foundation for Prader Willi Research (http://www.fpwr.org/) is a well established
support group.
MERD India is a parent support group in India http://www.merdindia.com/index.html. I have had the privilege of meeting Mr. Vikas
Bhatis, a founding Member of MERD India.
Students in the field of Genetic Counseling can gain a great deal on the
perspective of a member of a family at risk of a genetic disorder.
Considering the valuable role of such organizations, what
role does the healthcare professional play in encouraging parents to start a
support group? Professionals in the field
of genetics, in particular, genetic counselors can be both catalysts as well as
activists in helping families start support groups, provide technical guidance
as well as help with operational needs including fund raising and grant
writing. A review of the Prader Willi
Research Foundation web site is educational to understand the potential of such
support groups. Check out the Board of
Directors of the PWRF to see how the members are all parents of children with
PWS. The range of information in the websites is
very broad. There is educational material for all including families of
children with PWS, students in the field of genetics, scientists and
researchers as well as for any individual interested in learning about the
various aspects of PWS.
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