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How we can help

The CJDSGN offers free support, information and assistance for family members and friends of patients suffering with suspected CJD and other prion disease by providing:

  • National tolls free – 24 hour-help line.
  • An expansive website.
  • Information packages for CJD families.
  • Information packages for health care professionals caring for a suspected CJD patient.
  • Information on CJD and infection control.
  • An annual National CJD conference.
  • Face to face meetings.
  • Presentations at conferences and medical facilities.
  • An educational DVD.

We liaise on behalf of those affected by CJD and other prion diseases with health care professionals, state and commonwealth health departments, the Australian National CJD Registry (ANCJDR) and any other bodies or services.

We advocate on behalf of those experiencing delays or facing discrimination when accessing medical treatment or care to prevent cancellation and/or postponement of surgery.

We offer the opportunity for CJD patients, family members to seek advice and assistance from the CJDSGN Committee Expert Advisors in regard to patient diagnosis and infection control issues.

We assist families to fundraise for CJD research.