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Supporting Families Affected by Prion Disease
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About Prion Disease
Types of Prion Disease
Diagnosis
CJD Foundation Resources
Glossary
FAQs
For Families
Caregiver Support
End of Life Planning
Expert Interviews
Conference Recordings
Drug Development
Family Memorial Research Grants
Research Grant Recipients
Family Stories
For Professionals
Researchers
Funeral Professionals
Hospice Professionals
Infection Control
Medical Education
Genetic Counselors
About Us
Our Mission
Leadership
Programs and Events
News
Financial Information
Contact Us
Take Action
Advocacy
Strides for CJD
Donate
Fundraise
Memory Quilt
Prion Registry
The mission of the Creutzfeldt-Jakob Disease Foundation is to support families affected by Prion Disease, raise awareness, and support medical education and research.
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Join Strides for CJD at one of 20 events across the country. Events take place the first two weekends of October.
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Community Statement from the Broad Institute
We have initiated a first-in-human clinical trial to evaluate an investigational drug called PrP-siRNA in patients diagnosed with prion disease.
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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.
View Memory Quilt
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
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
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Show your support for those affected by CJD and other prion diseases.
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