CJD Support New Zealand (CJDSNZ, Te tautoko i te mate Creutzfeldt-Jakob i Aotearoa)

Key facts

• The organisation calls itself a patient association and states its purpose as information and assistance for family, whanau and friends of people with suspected CJD, other prion diseases or increased CJD risk.
• It runs a national toll-free helpline (0800 225531) and describes a 24-hour help line.
• Services listed: an information package for families and whanau, an information package and patient care handbook for health care professionals, face-to-face meetings where appropriate, and connections between families for mutual support.
• It states that about 5 to 8 people die of CJD in New Zealand each year; this is the organisation's own figure and was not checked against surveillance data.
• Its post-mortem page says suspected CJD post-mortems are done at national referral sites for high-risk post-mortems in Christchurch and Auckland, and that samples may be sent overseas.
• The same page explains that a positive CSF RT-QuIC gives high diagnostic confidence, but a case counts as definite for surveillance only with brain tissue confirmation, and that families should not feel pressured to consent in such cases.
• A genetic testing page covers Australasia and links a PRNP testing guidelines PDF, apparently uploaded in July 2021 (inferred from the file path).
• On 19 August 2025 it announced a free 1st Annual National Information Meeting for CJD family members, people at increased risk and community carers, covering diagnosis, genetic testing, research studies and drug development; date and venue are not given.
• It links the University of Otago-hosted New Zealand CJD Surveillance Registry, the Ministry of Health Communicable Disease Control Manual, NZ Blood donor information, the Australian CJD Support Group Network and CJDISA.
• CJDISA's directory lists it as a member association; New Zealand is one of 13 member countries, and Australia is represented by a single member, the CJD Support Group Network.
• No New Zealand charity register record was found for it; legal status is unverified.

Timeline

1. 2021Genetic testing guidelines PDF apparently uploaded to the site (date inferred from file path).
2. 20251st Annual National Information Meeting announced, 19 August post.
3. 2025Site banner promotes International CJD Awareness Day on 12 November 2025, run by CJDISA.
4. 2026Listed as a CJDISA member association in the alliance directory (page undated, retrieved this month).