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

  • National toll 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 provide a mechanism for the DoHA to receive comments and concerns of human pituitary hormone recipients.

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 and those at ’increased risk of developing CJD’ 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.

 

Disclaimer: The CJDSGN is an independent organisation and has no formal affiliations with the Australian National CJD Registry (ANCJDR).