Join our Community

At the GSNV, we welcome everyone to join our community. By coming together across the genetic, undiagnosed and rare disease ecosystem, we can achieve shared advocacy goals both locally and globally. 

Our inclusive community includes a diverse range of individuals and organisations united by shared purpose:

• Support groups (formal and informal)
• Families and individuals living with genetic, undiagnosed and rare disease (GUaRD)
• Health and allied health professionals
• Educators, Students and interested community supporters

As a community member, you help:

• Support the advocacy initiatives of our genetic, undiagnosed and rare disease community
• Connect with peers through training, guidance, and resource sharing
• Grow a more informed, inclusive, and empowered genetic support network in Victoria

Community Members have free access to

Participate in our community forum RareNET

Coming together at our monthly forum, RareNET ensures our community shares and connects over joint advocacy initiatives, capacity building and networking.

RareNET ensures the lived experience contributes to shaping and strengthening services, support and policy to enhance the quality of live of those living with genetic, undiagnosed and rare disease.

Our forum welcomes presenters across the GUaRD sector, including industry, government and research. Each forum ensures that community members can discuss opportunities and challenges that impact people living with rare disease. 

RareNET is a GUARD Collaborative Australia initiative.

Small Grants Program
The GSNV accepts donations of all sizes. Your support empowers GSNV to fund Small Grants, providing crucial resources and support to under‑resourced support groups.

Contact Monica Ferrie, CEO for further information

Monthly E‑Newsletter – Care for Rare
Stay connected with community updates, including new research, resources, services, and advocacy insights across the local, national and global landscape.

Free Community Training
Access our annual training sessions at no cost. Our training programs are designed to build skills across a range of topics such as:

• Inclusive language guidelines
• Practical tools for mental health and wellbeing
• Research involvement
• Volunteer engagement, and more.

 Support Group Development
Tap into expert guidance when setting up, governing, or growing your own support group. Gain FREE access to thegeneticlink.org.au leveraging GSNV’s community know‑how and volunteer network.

Join the GSNV Community Today