For patients, friends and family
Information for patients, friends and family
The Genetic Support Council WA provides information and support to individuals and families living with a genetic condition.
A Resource Officer can assist with enquiries and resources relating to education, parenting, respite care, health services and other community support organisations.
Being diagnosed with a genetic disease may be extremely difficult and confusing for you and your family. If you or a loved one has been diagnosed recently, the Council may be able to help you navigate through this complicated time.
Resource guide for families
Knowing where to access information, services or support can play a vital role in optimising day-to-day quality of life. The Resource Guide for Families outlines services that may be of assistance and how you may access them. This guide has been developed to help families who have had difficulty locating services and resources when the need arises.
- Download: The Resource Guide for Families (PDF)
The GSCWA offer the Link Line service which is published in our bi-monthly Newsletter the Gene Advocate. The Link Line provides a supportive and confidential means of connecting individuals and families for whom no known genetic support group exists.
- Please call us for further information on (08) 9485 8999
Carers WA assist people who provide unpaid care and support to a family member or friend who is frail and elderly, has dementia, a mental or chronic illness, a disability, or complex needs, or receives palliative care. You do not need to live with the person you care for You do not need to be the main source of care and support You do not have to provide care every day or over many years You do not have to receive the Carer Payment or Allowance from Centrelink.
- For further information visit: http://www.carerswa.asn.au
Genetic counselling is the provision of information and support regarding genetic disorders, birth anomalies, health concerns or test results relating to the individual or their family. This may involve the diagnosis of a genetic condition and supportive counselling to assist decision making and the adjustment process that occurs when a condition is new to a family or individual. Genetic counselling may occur via the telephone or by appointment where the family or individual attends a genetic clinic.
Additional services such as prenatal diagnosis, carrier detection, predictive testing and newborn screening services are often important components of the genetic counselling process and provide valuable information to the individual, family and health professionals.
Additional information and contact details are available at: http://www.kemh.health.wa.gov.au/services/genetics
Family Health History: Tips on talking to your family
Talk to a relative/s you feel comfortable with.
Choose an appropriate time and situation to ask for the information.
Explain how this information is for the benefit of your health and for future generations. Write the information down and add to your list as new information is found.
- Further Information is Available on 'Understanding Your Family Health History' at: http://www.genetics.edu.au
- Download: List of respite services in the Perth (PDF)
- Download: Information and details about rare diseases in Australia (PDF)
- Download: Genetic Alliance’s How-To Guide: Attending School with a Genetic Condition: A Guide for Parents (PDF) - The guide is not specific to any genetic condition.
- Download: Directory Community Support Organisations in Western Australia (PDF)