The GSNV assists 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 these core pillars:
Education – Ensuring access to information and building awareness
- The Genetic Link is our resource portal housing credible, current and easy-to-navigate information sources.
- Our information channels keep our community informed and aware of workshops and training, developments, opportunities and discussions in the genetic health and wellbeing space.
- We aim to build 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 forums, on committees and in communities as patient representatives and consumer voices to educate on lived experience of living with genetic, undiagnosed and rare disease.
- 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 the community and amplify that voice.
- We seek out shared common experiences and then seek action, together.
- We engage in ongoing discussion about support outside the health system – broadening the thinking around health to include holistic, wellbeing strategies outside the traditional health system.
Support – Everyone feels supported when they need it
- We connect people and families with support through our network and directory of support groups locally and globally.
- 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 our community in these ways:
Support Groups
- Creating awareness and promoting your support group, conditions, important issues or current events through our website and communications channels
- Contribute to specific government enquiries
- Offer a pool of GSNV Volunteer support
- Advice and support for grant applications
- Governance workshops for newly formed support groups
- Access to the Genetic Link website and Support Group specific portal
Individuals and Families
- Provide support to individuals affected by genetic conditions and support for their families and carers
- Peer support training
- Celebrating Rare Disease Day with our annual community event
- Access to our monthly newsletter and events
Health Professionals
- Resources for Health Professionals to navigate the lived-experience of our community through our website and the Genetic Link