CJD Support Group Network (Australia)

Key facts

• The network was established in 1994 with Commonwealth health department funding, after a 1993 departmental meeting of pituitary hormone recipients about support groups; it began as CJD Support Group Network Inc.
• In 2004 it was restructured and renamed the CJD Support Group Network, with a new committee that included a recipient representative; its ABN has been active since 9 March 2004.
• The legal entity is C J D Support Group Network Pty Ltd, an Australian private company based in NSW, registered with the ACNC as a Health Promotion Charity and endorsed as a Deductible Gift Recipient, both from 1 April 2013.
• It describes itself as a non-profit company that receives grants and donations to support all Australians affected by CJD or other prion diseases, run by a Management Committee.
• It says it is funded by the Department of Health to support people at increased risk of CJD, and the Department also funds its website.
• The people it serves include families caring for or bereaved by CJD and people at increased risk through past pituitary hormone treatment, contaminated surgical instruments or dura mater grafts, and families affected by genetic CJD.
• The Australian pituitary hormone program it grew out of treated about 1,570 women and 60 men for infertility and about 660 children for short stature between 1967 and 1985.
• Services are free: a national toll-free 24 hour helpline, information packages for families and for health professionals, expert advisor advice on diagnosis and infection control, family meetings, presentations to health services and an education program and handbook for clinicians.
• It advocates for people at increased risk and for families affected by genetic CJD who may face delays in care or discrimination when infection control guidance is misapplied, and gives pituitary hormone recipients a channel to the Department of Health.
• It liaises with the Australian National CJD Registry, but states that it is independent and has no formal affiliation with the Registry; the Registry for its part is described as linked to a CJD Support Group Network and a counselling service.
• It holds an Annual National CJD Conference; the 14th to 17th ran from 2023 to 2026, and 2026 speakers came from the Florey (ANCJDR), Royal Melbourne Hospital, the University of Melbourne, the University of Edinburgh and PathWest, among others.
• It describes itself as a founding member of the CJD International Support Alliance, and CJDISA lists it as a full member.
• A University of Melbourne record lists a CJDSGN Memorial Grant on people affected by prion disease in Australia, funding period 2016, with Prof Steven Collins (an ANCJDR director) as the university researcher; funder and amount are not stated.
• A Department of Health review prepared by PwC, dated 16 September 2021, has a chapter on CJDSGN and is reported to call it the peak consumer advocacy and support group; this rests on search excerpts only.

Timeline

1. 1967to 1985 Australian human pituitary hormone program, whose recipients CJDSGN was first set up to support.
2. 1993Commonwealth health department convenes recipients to discuss support groups.
3. 1994CJD Support Group Network Inc established with department funding.
4. 2004Group restructured and renamed CJD Support Group Network.
5. 2004ABN of C J D Support Group Network Pty Ltd becomes active.
6. 2006First fundraising dinner, Sydney.
7. 2013Registered as a charity with the ACNC and endorsed as a Deductible Gift Recipient.
8. 2016CJDSGN Memorial Grant recorded at the University of Melbourne.
9. 2021PwC CJD Review final report for the Department of Health, with a chapter on CJDSGN (excerpt only).
10. 202314th Annual National CJD Conference.
11. 202617th Annual National CJD Conference.