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In addition to support from general practitioners, genetic services and professional counselling, patient referral to support groups or organisations can be beneficial and, in some cases, necessary for the wellbeing of the patient and/or their family.
Support groups and organisations can be an important source of peer support and empowerment, and provide practical information and advice about living with a genetic condition. Families can benefit from contact with other people in similar situations, regardless of their level of coping or need for support.
Support groups and organisations can have state-based or territory-based, national or international memberships, allowing families to appreciate that they are not alone in the challenges they may face living with a particular genetic condition.
Resource for patients
New South Wales’s Centre for Genetics Education maintains a list of genetics services