The CJD Support Group Network Pty Ltd is a non-profit company established to receive grants and donations to fund the work of supporting all Australians affected by Creutztfeldt-Jakob disease (CJD) or other prion diseases. The CJD Support Group Network Pty Ltd, trading as the CJD Support Group Network (CJDSGN), has established and maintains a Management Committee responsible for providing and managing the running of the network and projects that assist and support all Australians affected by prion disease.
The CJD Support Group Network, established in 1994, is funded by the department of Health to support and assist people ‘at increased risk of developing CJD’ by promoting an environment in health care settings where patients feel comfortable and confident of receiving equity of care when disclosing their ‘at risk’ status
The CJDSGN provides information, support and assistance to families who are caring for or coming to terms with the loss of a loved one to CJD and is committed to providing resources to educate and inform family members and carers of patients, to facilitate informed decisions and provide best possible patient care.
The CJDSGN works as an advocate on behalf of individuals and families affected by CJD and other prion diseases. The CJDSGN provides a national educational and awareness program, networks with health care professionals and is committed to supporting surveillance of CJD and other prion diseases in Australia and links family members together for mutual support.
The CJD Support Group Network Pty Ltd is a registered by the Australian Charity and Not-for profits and the ATO as a charity and assists families who are committed to raise much needed money to support CJD research.
Download a brochure about The CJD Support Network (PDF)