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News

Save the Date – 1st Annual National Information Meeting

  • Post published:March 27, 2025
  • Post category:CJDSNZ Meetings/Events/News

Continue ReadingSave the Date – 1st Annual National Information Meeting

Link to post: ION717 trial fully enrolled

  • Post published:January 6, 2025
  • Post category:News/Prion Alliance/Research

Link: ION717 Trial fully Enrolled from: cureFFI.org

Continue ReadingLink to post: ION717 trial fully enrolled

Clinical Trial Update for Prion Diseases, December 2024

  • Post published:December 30, 2024
  • Post category:Ionis Pharmaceuticals/News/Research

December 2024 December 30th, 2024 - Enrolment is now complete for the Ionis Phase 1/2a clinical trial of ION717 called PrProfile for symptomatic prion disease patients. Updates will be provided as…

Continue ReadingClinical Trial Update for Prion Diseases, December 2024

Link to article (update from Prion Alliance): Divalent siRNA for prion disease

  • Post published:December 12, 2024
  • Post category:News/Prion Alliance/Research

Link: Divalent siRNA for prion disease Update from Prion Alliancevia biorxiv.org

Continue ReadingLink to article (update from Prion Alliance): Divalent siRNA for prion disease

International CJD Awareness Day awareness campaign on November 12th

  • Post published:November 7, 2024
  • Post category:Events/News

International CJD Awareness Day is November 12th Be a part of our awareness campaign #cjdawareness #priondiseaseawareness Post and share that you are 'Globally united for prion disease awareness' to your…

Continue ReadingInternational CJD Awareness Day awareness campaign on November 12th

Link to case study paper: Creutzfeldt–Jakob disease: From presentation to palliative care

  • Post published:October 26, 2024
  • Post category:News

Link: Creutzfeldt–Jakob disease: From presentation to palliative care Case Study by Debra Scott, Suzanne Solvyns, David Ralston, Mariese A Hely from Australian Journal of General PracticeVolume 53, Issue 10, October 2024

Continue ReadingLink to case study paper: Creutzfeldt–Jakob disease: From presentation to palliative care

Link to article: ‘Epigenome editor’ silences gene that causes deadly brain disorders

  • Post published:June 28, 2024
  • Post category:Clinical trials general information/News/Research

Link: ‘Epigenome editor’ silences gene that causes deadly brain disorders by Gemma Conroy from nature.com

Continue ReadingLink to article: ‘Epigenome editor’ silences gene that causes deadly brain disorders

Link to blog: Why the ION717 trial is paused

  • Post published:April 14, 2024
  • Post category:News/Prion Alliance/Research

Below is a link to Erik Minikel's blog sharing his perspective on the Ionis Community Statement regarding the recruiting pause of the Prion Disease clinical trial. Link - Why the ION717…

Continue ReadingLink to blog: Why the ION717 trial is paused

Link to article: Foiling Deadly Prions

  • Post published:March 24, 2024
  • Post category:Clinical trials general information/News/Research

From science.org Link: Foiling Deadly Prions. Can the course of fatal prion diseases be changed by removing the protein before it goes bad? By Meredith Wadman

Continue ReadingLink to article: Foiling Deadly Prions

Video Presentation: ZF-transcription factors for Prion Disease

  • Post published:March 14, 2024
  • Post category:News/Research/Sangamo Therapeutics

“Engineered zinc finger protein transcription factors potently reduce brain PrP expression and extend survival in prion-infected mice” Bryan Zeitler et al.This is a post-conference recording of a presentation given at…

Continue ReadingVideo Presentation: ZF-transcription factors for Prion Disease
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  • National Toll Free Helpline:0800 225531

News & Events

  • Save the Date – 1st Annual National Information Meeting
  • Link to post: ION717 trial fully enrolled
  • Clinical Trial Update for Prion Diseases, December 2024
  • Link to article (update from Prion Alliance): Divalent siRNA for prion disease
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