Genetics 3: The role of genetics support groups

Supervisor

Leah Lonsdale

Department

Genetic Support Network Victoria

Email

leah@gsnv.org.au

Objectives

1. What is the range of functions that a genetic support group might perform? Give real examples of these with specific support groups
2. How genetic support groups function can vary, based on different models, eg 'kitchen table', boardroom structure. Choose two support groups that have different organisational structures and compare the specific roles of each
3. What do you think the relationship is currently between a medical professional (eg. doctor) and genetic support groups. How do you think this could be improved?
4. Imagine you are a parent of a 10 year old child who has been recently diagnosed with a rare chromosome translocation. How would a genetic support group be of value to you?

Resources and learning opportunities

1. Genetic Support Network Victoria (GSNV), 10th floor MCRI. Key contact: Leah Lonsdale, Coordinator. GSNV web site
2. Senior social worker, Margaret Sahhar, Genetic Health Services Victoria
3. Child Health Information Centre (CHIC), RCH
4. The Association for Children with a Disability
5. Spend time with a genetics support group - check out GSNV website for details of specific support groups