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Home » Individuals and Families » Further information and resources

Further information and resources

Living with a Rare Disease 

Most rare diseases have no cure, so living with a rare disease is an ongoing learning experience for patients and families. Here is a collection of stories and videos from people who have generously shared their experiences of living with a rare disease.


Australian Government National Health and Medical Research Council

This Genetics subsite is a central repository for human genetics resources and information developed by the National Health and Medical Research Council (NHMRC) for health professionals, consumers, students and the Australian community. Useful links include a genetics glossary, information about genetic discrimination, and a list of services and resources.


Genetics in Family Medicine

Patient and Family Fact Sheets are available on a range of different genetic conditions, terms, tests and treatments.


Centre for Genetic Education

The Centre for Genetic Education have an extensive range of fact sheets on a number of different genetic conditions, as well as easy to understand information about general genetics and different treatments or tests available.



The resources which are listed here and those resources developed elsewhere which are distributed by GSNV are intended for educational purposes only. It is not intended to serve as medical advice. These resources are not designed for diagnostic or treatment purposes. GSNV is a not for profit service which aims to bring the agencies and services involved in the area of genetics to the attention of potential clients and the community.

Client referrals to genetics services, support groups, and community service agencies are based on current listings of availability of those services. The GSNV assumes no responsibility for the type, amount or quality of assistance, support or service provided by other agencies. The suggested resources are in no way to be considered a substitute for individual advice concerning diagnosis or treatment from an appropriately-skilled health care provider. Individuals requiring diagnosis, risk assessment, treatment, or who have specific questions, are urged to contact their local genetics service or health care provider. Alternatively contact GSNV on (03) 8341 6315 for appropriate referrals.


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