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Advocacy Day

More than 60 people participated in this year’s CJD Advocacy Day in Washington, DC. They met with over 70 legislators from 25 states sharing the CJD community’s legislative requests and educating them about CJD. We are asking for the continuation of the $9M CDC funding for prion disease surveillance through the CDC/NPDPSC and the addition of CJD to the list of “Related Dementia’s” funded by the NIH.
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Family Conference

The CJD Foundation Family Conference will take place July 10-12, 2026 in Chicago, IL. The conference brings together prion disease experts and families affected by prion disease. Over two days, attendees meet with other families, share stories, hear from grant recipients about their research and learn more about CJD Foundation programs and government programs.
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Strides for CJD

Registration is open for Strides for CJD, taking place October 3-4 and October 10-11! This year there will be over 20 events, including five brand new locations--Central Indiana; Cincinnati, OH; Phoenix, AZ; Solon, IA; and Lowcountry, SC! We stride to support family programs, research grants and medical education. Sign up today to join more than 2,000 participants across the nation.
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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​

Information on Clinical Trials
3-17-2026 Ionis Pharmaceuticals Community Statement
Information on Drug Development
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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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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