Individuals and Families

The Genetic and Rare Disease Network (GaRDN) provides information to support individuals, families and carers living with genetic, rare and undiagnosed conditions.

GaRDN can assist with enquiries and resources relating to education, parenting, respite care, health services and other community support organisations.

Being diagnosed with a genetic or rare condition may be extremely difficult and confusing for you and your family. If you or a loved one has been diagnosed recently, GaRDN may be able to help you navigate through this complicated time.

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

RareConnect

Living with a rare disease can be an isolating experience. RareConnect was created by EURORDIS (European Rare Disease Organisation) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.

Find an online community for your area of interest. Meet, interact and learn from your peers and medical experts. They have 48 rare disease communities with more to come soon!

Visit: https://www.rareconnect.org/en

Additional Information

Genetic Alliance’s How-To Guide: Attending School with a Genetic Condition: A Guide for Parents – The guide is not specific to any genetic condition.

Link Line

GaRDN offer the Link Line service which is published in our quarterly Newsletter ‘The Advocate’. The Link Line provides a supportive and confidential means of connecting individuals and families for whom no known genetic or rare disease support group exists.

Please contact us  for further information on (08) 9485 8999, 0477 149 949 or email: hello@gardn.org.au 

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