Resources for Parents and Families

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.

Rare medical conditions brochure

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 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!

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.

Directory of Genetic and Rare Disease Support Groups and Community Support Organisations in Western Australia

The purpose of the Directory is to provide genetic and rare disease support information to health professionals, individuals and Genetic and Rare Disease Support Groups. The aim of the Directory is to assist with referral for individuals and families with either a known or newly diagnosed genetic and/or rare condition or predisposition to these Genetic and Rare Disease Support Groups.

Directory of Genetic and Rare Disease Support Groups and Community Support Organisations in Western Australia
– this is frequently updated, if you find any out of date information please contact us .

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 1300 770 995 or email: [email protected] 

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