We seek to assist people with genetic conditions and those who support them including support groups, health professionals, non-health professionals, families, and the broader community. Our work focuses on our core pillars:
Education – Ensuring access to information and building awareness
We have developed a resource portal for reference and referral to put in one place a credible, current and easy to navigate information source.
We have a number of information channels to keep people informed and aware of developments, opportunities and discussion in the genetic health and wellbeing space.
We are building capacity in the support sector through facilitating issues-based discussions, targeted skill and knowledge development and networking opportunities to learn from each other.
We participate in a range of forums, on Committees and in Communities as patient representatives, consumer voices to educate on lived experience.
We engage with genetic health professionals to educate on the role of the support sector and access for patients and families for support.
Advocacy – Ensuring key messages are heard by the right people at the right time
We collaborate to ensure a powerful voice from community and then use that voice.
We seek out ‘fellow-travellers’ to find shared common experience and then seek to do something about it.
We are engaged in an ongoing discussion about support outside the health system – broadening the thinking around health to including wellbeing strategies outside the traditional health system.
Support – Everyone feels supported when they need it
We seek to connect people and families with support through our network.
We facilitate opportunities to share issues and develop collaborative solutions.
We provide direct support for individuals, families and support groups through a range of services including telephone support, referral, connection, listening etc.
We support the following groups in these ways:
- Creating awareness and promoting your support group, conditions, important issues or current events through our website and communications
- Contributing to specific government enquiries
- GSNV Volunteer support
- Grant applications
- Governance workshops for newly formed support groups
- Membership to the Genetic Link website and Support Group specific portal
Individuals and Families
- Providing support to individuals affected by genetic conditions and support for their families and carers
- Peer support training
- Rare Disease Day seminar and patient information sessions
- Access to newsletters and events held by the GSNV
- Referrals, support and dissemination of information
- Resources for Health Professionals through our website and the Genetic Link
Receiving feedback: we are here to assist and match our services with community needs