Structure

The CJD Support Group Network was established in 1994, and is funded by the department of Health and Ageing:

CJD Support Group Network was restructured in February 2004 and become known as the CJD Support Group Network (CJDSGN).

A non profit company, CJD Support Group Network Pty Ltd was established to take over the contract and funding grant provided by the Commonwealth Department of Health and Ageing (DoHA) to provide a national network of services and support to:

recipients of human pituitary hormones and their families,
people with a genetic predisposition to CJD and their families
families caring for, or coming to terms with the loss of a loved one to CJD
people identified as being at an increased risk of contracting CJD ie due to a ‘lookback’ following a surgical procedure, and their families

The CJDSGN acts as an advocate on behalf of people who are at increase risk of CJD who are experiencing difficulties accessing medical treatment because of infection control issues.

The CJDSGN provides a mechanism for the DoHA to receive comments and concerns of hPH recipients and CJD family members.

The CJDSGN represents the views of its members in other forums.