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Purpose and objective

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 objectives are:

  • To provide support and information to all Australians affected by Creutzfeldt – Jakob disease (CJD) or other prion diseases.
  • Advocate on behalf of people ‘at increased risk of developing CJD’ and family members of CJD patients, in particular those affected by genetic CJD, who may suffer discrimination or experience difficulties accessing adequate and timely medical treatment due to the implications of the CJD infection control guidelines not being applied correctly.
  • Promote awareness and increased knowledge of CJD and other prion diseases amongst health care professionals and the general community.
  • Provide a national education program that promotes awareness of the privacy issues for ‘at risk of CJD’ patients and the needs of the CJD families.
  • Advocate for appropriate care for CJD patients and improvements in diagnostic tools.
  • Provide support and assistance to CJD family members, advocate on their behalf and liaise with health care workers and other organisational bodies when required.
  • Liaise with the Department of Health, State Health Departments, ANCJDR and health care professionals to provide a network of experts able to offer information and advice when needed.
  • Provide a mechanism for the DoHA to receive comments and concerns of hPH recipients.
  • Link CJD families together to share experiences and provide mutual support and provide a network through which hPH recipients can interact with each other for mutual support, to share information and discuss relevant issues and concerns.
  • Represent the views of those we represent in other forums.
  • Always keep those we represent clearly in focus and only act on those issues that benefit them.