Purpose

The CJD Support Group Network (CJDSGN) maintains a national support group network through which all Australians affected by Creutzfeldt-Jakob (CJD) or other prion disease, can interact with each other and provide mutual support, share information and discuss relevant issues and concerns.

The CJDSGN provides assistance and support to families who are caring for, or coming to terms with the loss of a loved one to CJD.

The CJDSGN provides support and assistance for people, and their families who are ‘at risk of CJD’ from exposure to human pituitary hormones, contaminated surgical instruments or dura mater transplants or other.

The CJDSGN is committed to ongoing educational and awareness programs.

The CJDSGN provides:

Free membership
National toll free hotline
information brochures and fact sheets
Newsletters for members
Face to face meetings
National conference
‘Understanding CJD’ DVD
Support for fundraising for CJD research in Australia
A mechanism to take concerns to the DoHA
An informative website

The CJDSGN objectives are to:

Represent the views of our members wherever possible.
Continue to advocate on behalf of people ‘at risk of CJD’ and those affected by genetic CJD who are experiencing difficulties accessing adequate and timely medical treatment because of infection control issues.
Promote awareness of privacy issues for ‘at risk patients’ and their children
Advocate for appropriate care for CJD patients
Work with the state health departments to provide workshops and seminars on understanding CJD
Link families together for mutual support
Providing up to date information on research and developments around the world.
To continue to liaise closely with and seek advice from the Australian National CJD Registry and state health departments on behalf of members.
Liaise with health care workers and provide information as needed.