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Community Statement from the Broad Institute

We are proud to announce the launch of a first-in-human clinical trial of a new drug candidate for prion disease. The investigational drug is a divalent siRNA called PrP-siRNA, which is administered intrathecally — meaning, by a lumbar puncture — and is designed to reduce the amount of prion protein (or PrP) the brain produces.
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Family Conference

The CJD Foundation Family Conference took place July 10-12, 2026 in Chicago, IL. The conference brought together prion disease experts and families affected by prion disease. Over two days, attendees met with other families, shared stories, heard from grant recipients about their research and learned more about CJD Foundation programs and government programs.
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Strides for CJD

We stride to support family programs, research grants and medical education. Premier, Diamond and Platinum Sponsors who donate by Sunday, August 9th at 11:59pm ET will have their name (individual) or logo (company) displayed on participant t-shirts. Gold Sponsors will have their name (not their logo) listed on participant T-shirts. Teams who raise $1,000 by Sunday, August 9th at 11:59pm ET will have their loved one's name listed on participant t-shirts.
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Types of Prion Diseases

Learn about the three types of prion diseases.
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Programs for Families

View upcoming support groups and other programs.
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Contact Our HelpLine

Connect with resources and have questions answered.
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Memory Quilt

A tribute to loved ones affected by prion disease.
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Clinical Trial Updates​

4-22-2026 Broad Institute Community Statement
3-17-2026 Ionis Pharmaceuticals Community Statement
Information on Drug Development
Information on Broad Institute Clinical Trial
Information on Ionis Pharmaceuticals Clinical Trial
Creutzfeldt-Jakob Disease (CJD) is a rare, fatal brain disorder within a group of illnesses called prion diseases.
In the United States there are nearly 500 new CJD cases per year.
The incidence of CJD cases worldwide is one to two cases, per million individuals, per year.

How we’re making a difference.

  • We provide a HelpLine - 7-days a week - to connect families with resources they need
  • We offer referrals, support groups, and webinars
  • We help educate families, caregivers, medical professionals, and funeral professionals
  • We hold an Annual Family Conference that brings together affected families and prion disease experts
  • We collaborate with scientists, clinicians, medical centers, health authorities, professional organizations, and international patient associations
  • We offer a Research Grant Program with international awardees selected by our Scientific Advisory Committee
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We earned a 4-Star Rating from Charity Navigator!

2026 Research Grant & Fellowship Recipients

The CJD Foundation has awarded nearly $900,000 in new research grants and fellowships to Prion Disease research.
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View The CJD Foundation Memory Quilt!

A tribute to loved ones affected by CJD and other prion diseases.
Memory Quilt

Visit Our Store!

Show your support for those affected by CJD and other prion diseases.
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