Purpose & STRUCTURE

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.

 

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.

© Copyright CJD Support Group Pty Ltd 2005-2009