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Make a donation to support CJD Research in Australia or to assist the work of the CJD Support Group Network supporting all Australians affected by CJD and other prion diseases.

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News & Events

  • Regeneron Managed Access Program Policy & Clinical Trial site information
  • Clinical Trial Update for Prion Diseases, September 2026
  • Register – CJDSGN Adelaide Meeting – Saturday 29th August 2026

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  Join our private Facebook Group to communicate with other families

CJDSGN FACEBOOK Page for Updates

CJD Support Group Network

1 month ago

CJD Support Group Network
www.croatiaweek.com/australian-croatian-runner-827km-croatia-coast/ ...

Australian-Croatian runner completes epic 827km journey along Croatia’s coast

www.croatiaweek.com

By Vesna Trokter Australian-Croatian ultramarathon runner Aydan Marko Papac from Melbourne has completed the most demanding sporting feat of his career, one that few would dare to attempt, 827 kilomet...
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CJD Support Group Network

6 months ago

CJD Support Group Network
A second human clinical trial for prion disease is now underway—an important and hopeful step forward for our community. Today the Broad Institute, Cambridge MA, officially announced that NN112 or PRiSM, their clinical trial of a divalent siRNA for prion disease, is enrolling. Please find a community statement attached.Additional resources:[clinicaltrials.gov/study/NCT07444580/][www.cureffi.org/.../divalent-sirna-clinical.../][www.prionalliance.org/.../first-in-human-trial-of...]For this trial sites recruiting will only be in USA. For families and individuals impacted, this represents more than progress in science; it brings renewed hope for treatments, answers, and ultimately a cure. We are grateful to the researchers, participants, and advocates helping move this critical work forward. ...
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CJD Support Group Network

6 months ago

CJD Support Group Network
Bridge to Brisbane run/walk.CJD Support Group Network has been registered as a Charity for this event, and if you would like to join our Group: Team Prion we could all meet up and run or walk together.Date: Sunday 13th September 2026.Registrations are now Open! Early bird rates are til 30th June.When Registering Group: Team PrionPIN: PrionSelect Charity page: CJD Support Group NetworkSo gather your friends and family, order a CJD t-shirt from our website and let's raise awareness and have some fun!Let us know if your in and we can make a messenger group to keep in touch. ...

Bridge To Brisbane | Queensland's Largest Fun Run

bridgetobrisbane.com.au

Join thousands of runners, walkers, and wheelers as we take over the Gateway Bridge on Sunday 13 September 2026 for an unforgettable morning.
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CJD Support Group Network

6 months ago

CJD Support Group Network
If you live in or near Brisbane and want to participate and join this event to raise awareness and funds for CJD/prion disease you can register your team using the link below.The CJD Support Group Network has been added to 2026 Transurban Bridge to Brisbane!Sunday 13th September 2026You can register as an individual or create a team in memory of your loved one. You can also create fundraising pages for this event to raise money for CJD/prion disease research in Australia. ...

2026 Transurban Bridge to Brisbane | CJD Support Group Network

click.grassrootz.com

Get ready to RUN FOR FUN when Queensland’s biggest, brightest, and best-loved fun run returns for it’s 30th Birthday in 2026! The Transurban Bridge to Brisbane will welcome an estimated 40,000 peo...
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CJD Support Group Network

7 months ago

CJD Support Group Network
www.cureffi.org/2026/03/17/ion717-trial-reopens/ ...

ION717 trial re-opens with 3rd dosing regimen

www.cureffi.org

Ionis Pharmaceuticals is adding a third dosing regimen to PrProfile, its Phase 1/2a trial in symptomatic prion disease.
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CJDSGN X Feed

CJD SUPPORT GROUP NETWORK Follow

We offer support, info and assistance to loved ones of patients suffering with suspected CJD and other prion disease & those at increased risk of developing CJD

CjdSupportgroup
cjdsupportgroup

CJD SUPPORT GROUP NETWORK

@cjdsupportgroup ·
7 Jun

On Friday 5th June Dr Debra Scott was part of a panel at the International Dementia conference 2026 held in Sydney. This conference was attended by 1000 clinicians and health care workers and she again raised the flag promoting awareness of CJD/prion disease. 🧡🧡

Reply on Twitter 2063533243669123100 Retweet on Twitter 2063533243669123100 Like on Twitter 2063533243669123100 1 X 2063533243669123100
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cureffi

Eric Vallabh Minikel

Verified account @cureffi ·
17 Mar

Ionis Pharmaceuticals has re-opened its Phase 1/2a trial of a PrP-lowering antisense oligonucleotide drug for prion disease, adding a 3rd dosing regimen - blog post:

Reply on Twitter 2033939660230025524 Retweet on Twitter 2033939660230025524 5 Like on Twitter 2033939660230025524 25 X 2033939660230025524
cjdsupportgroup

CJD SUPPORT GROUP NETWORK

@cjdsupportgroup ·
5 Mar

Final reminder...CJD family members and friends and those at increased risk of CJD, in Queensland are all invited to attend the next face to face meeting hosted by the CJD Support Group at the Mantra on South Bank on Saturday 14th March 2026. Please register online.

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Close Menu
  • What is CJD?
    • Forms of CJD
    • Symptoms of CJD
    • Diagnosing CJD
    • FAQs
    • Fact vs. Fiction
    • An Introduction to Prion disease
  • We support …
    • CJD family and friends
      • How we can help
      • Request an information package or join our mailing list
      • Family stories
      • Genetic testing
      • Dealing with a diagnosis of CJD
      • What we can expect
      • Palliative care
      • Death with dignity
      • Grief
      • Infection control and funerals
      • Autopsies
      • Contact Us
    • People at “increased risk”
      • Human Pituitary Hormone Recipients
        • Timeline of the Australian hPH program
        • Pituitary hormones initiatives
      • FAQs
      • Contact Us
    • Health care professionals
      • Education program
      • Handbook
      • Contact Us
  • Resources
    • Brochures and fact sheets
    • Information Packages
      • For CJD family members
      • For Health care professionals
    • Clinical Workshops
    • Annual National CJD Conferences
      • 2023 14th Annual National CJD Conference
      • 2024 15th Annual National CJD Conference
      • 2025 16th Annual National CJD Conference
      • 2026 17th Annual National CJD Conference
    • PRNP Genetic testing
    • Diagnostic tools
    • Publications
      • Articles of interest
    • Healthshare
    • Research
    • Australian research
    • Related links
    • Surveillance in Australia
  • Infection Control
    • CJD families and those at risk
    • Completing a screening questionnaire
    • For health care professionals
    • For hospital admission staff
    • Organ and tissue donation
    • Funerals
  • Fundraising
    • CJDSGN Research Funding
    • Donate online
    • Shop
  • News
  • About us
    • Meet the team
    • Purpose and objective
    • Who we represent
    • Services we provide
    • CJD International Support Alliance (CJDISA)
    • Dedication
  • Contact