GSNV PROGRAMS

NEW GSNV VOLUNTEERS READY FOR ACTION!

The GSNV has recently onboarded 38 new volunteers and now has a pool of over 45 individuals keen to support organisations and groups working with genetic, rare, undiagnosed diseases. Our new volunteers come with a multitude of skills and attributes from data and analytics to social media and communications and all are studying in the field of genetics. If you are keen for some additional support, please send through your information and details of the support required to Sammy.bowden@vcgs.org.au

PATIENT PATHWAYS PROGRAM

This free program provides a Telehealth nurse who can provide information and links to practical supports for the genetic, undiagnosed and rare communities within Australia.

For more information and to book a time to talk with her, please click here and complete the online booking form.

GENOMICS IN SCHOOLS

These resources have a point of difference by developing an understanding of the ‘lived experience’ of genomic medicine and the key message of the potential of personal empowerment in health and wellbeing decision making. This program is designed to complement interdisciplinary studies, including study design from science, biology and humanities.

Download resources here

JOIN OUR DATABASE: SELF-NOMINATION FORMS

The purpose of the databases is to facilitate communication with healthcare providers, connecting with others, and providing newly diagnosed families a place to start. Our mission is to make it easier to find relevant support groups and rare disease professionals, including information and resources about rare diseases. Developed with consumers from the community including health professionals and those with lived experience of a rare disease, the vast majority of contributors agreed that they believed it would be beneficial for health care professionals and individuals with lived experience to have access to such a database and that it would help promote awareness of conditions, link healthcare professionals with support groups where they could provide information and support and contribute to a more holistic approach to healthcare. JOIN HERE as a provider, health professional or patient support group 17

The GSNV is always happy to promote the events of genetic support groups! If you would like your event to be added to the GSNV events calendar, promoted on our socials and/or put in our monthly newsletter that goes out to our subscribers and members please fill out the following fields at this link: SUBMIT YOUR EVENT

GSNV FUNDING SUPPORT TEAM

The GSNV in partnership with some amazing volunteers, has established a Grants Support Team to provide guidance, support and assistance to support groups in applying for funding applications to better support their group and community. If your support group requires assistance with writing a funding submission, pulling data to support an application or simply needs some guidance in how to draft an application, please contact our volunteer pool via the Grants Support Team email GSNVGrants@gmail.com.

MARGARET SAHHAR GRANT 2022 - GET READY TO APPLY!

The GSNV Margaret Sahhar Grant has been established to assist a support group with a significant boost allowing them to serve their communities by delivering on a pressing need or deliver an important benefit. In the spirit of Margaret Sahhar, we encourage collaboration, holistic approaches, short and long term benefit and consideration and evaluation. DGR Status is not required for GSNV Small Grants. Look out for more information in the next few months!

SUPPORT THE GENETIC SUPPORT NETWORK OF VICTORIA

We are responsive to a fast changing complex environment; we recognise the importance of, and seek to facilitate, a broad consumer voice in genetic health. We acknowledge the gap in existing support for many rare, undiagnosed and genetic conditions and continue to work to bridge this gap through education, advocacy and support. By choosing to make a donation to the GSNV, you will be supporting people living with genetic, undiagnosed and rare conditions and those who support them, including families and support groups, working with health professionals, social service supports, and the broader community to deliver outcomes where people can flourish and live their best lives. DONATE HERE