We help individuals and families to access services and connect with others who have a shared experience
We connect people to support groups and provide resources to ensure these groups are strong and sustainable
We provide additional resources for health professionals to help them better serve their patients who are impacted by genetic, rare and undiagnosed conditions
We are state-wide and we serve all people with genetic, undiagnosed and rare conditions, and those who support them.
Our work is underpinned by clarity of strategic direction, values and principles and is developed with a focus on Education, Advocacy and Support.
The GSNV Directories ,will, for the first time, address the multidisciplinary support that exists for rare genetic conditions on a national, international, and virtual level. These Directories will allow you to search for support based on a description, gene, category, or alternative name by filling in a few fields and a click of a button, without the hassle of googling support referrals and services online. The database is capturing the most up to date information about genetic support groups, from big incorporations to small online groups with the help of our dedicated and skilled group of GSNV volunteers.
Listing the registered support groups for rare, genetic and undiagnosed conditions in Victoria and Nationally .You can search by name of the support group, the condition or the general medical category .
Listing the Victorian & national services that you may find useful for extra support and information in managing day to day with a rare or genetic condition.
The GSNV list of genetic conditions and rare diseases will assist you in finding support for yourself or someone you know who has been diagnosed with a rare or genetic condition.
Clinical genetics services are medical services that specialise in genetics. These services are staffed by clinical geneticists and genetic counsellors.
These studies can involve both healthy people and patients who volunteer to trial new tests or treatments, with an aim to improve health for themselves and others.
Patient advocacy and support organisations should be primary stakeholders in establishing, maintaining, utilising and translating the benefits resulting from these registries, which is why the GSNV will be utilising and updating these registries.
GSNV is continuing to collate a list of Health Professionals with specialised knowledge and experience in rare and genetic diseases. This register can encourage collaboration, a multidisciplinary approach and be a valuable resource for Health Professionals caring for people with rare and genetic diseases.
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
The Genetic Support Network of Victoria wishes to acknowledge funding from the Department of Health, Victoria. We are engaged purposefully as active members/associates/collaborators of and with many stakeholders including:
APARDO, Australian Genomics, All Victorian Clinical Genetics Services, Centre for Consumer Directed Research, Carrier Screening Reference Group, Eurordis, Genetic Alliance Australia, Genetic Alliance UK, George Institute – Join Us Research Register, GUARD Collaborative Australia, InGeNA, Melbourne Genomics, Melbourne University, Murdoch Children’s Research Institute (MCRI), Rare Connect, Rare Disease International, Rare Disorders New Zealand, Rare Voices Australia, Rehabilitation Psychology for Injury, Chronic Illness and Pain Interest Group, Syndromes Without a Name Australia.
Royal Children’s Hospital
Flemington Road, Parkville, VIC 3052
P (03) 8341 6315 E info@gsnv.org.au
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