Upcoming Events

Click here for our Calendar of Events.

From our monthly in-person Support Group to our annual Family Conference and Strides for CJD event, you'll find everything you need here for CJD and prion disease education, advocacy, fundraising and support!

If you are hosting a Family Fundraiser to help the CJD Foundation fund education, research and family support programs, send your event info to us at help@cjdfoundation.org. We'll post it here and in our new e-newsletter!

If you want to start your own fundraising page, click here.

Monday, February 7, 2022 - 6:00pm

This group typically meets one Monday each month in Manhattan, but is currently meeting by phone, from 6 to 8 p.m.

Advance registration is required; email Help@CJDFoundation.org.

Tuesday, February 15, 2022 - 7:00pm

If you are currently caring for a loved one with CJD/Prion Disease, please join us for a Caregivers’ Support Group by phone.

Support Group discussion will be led by several family members who have cared for a loved one in the past.  Participants have the opportunity to share their questions and concerns and gain ideas and insights from the group.  Only CURRENT caregivers may register.

To register, please contact our Helpline at 800-659-1991.  We will share information and referrals with you, then qualify and register you for the caregivers group.

Monday, February 28, 2022 - 9:00am

Those of us affected by CJD remember and miss our loved ones every day. But Rare Disease Day, February 28, 2022, reminds us to join with others around the world to honor the memory of our loved ones, and to advocate for global awareness and education. 

You have the knowledge to educate others. Together we can raise awareness of prion disease and make a difference!

Here are Six Ways to Raise Awareness of Prion Disease on February 28:
  • Write to your legislator to ask that Congress increase funding for CJD surveillance and research using our letter template.
  • Educate your friends, physicians, and community about CJD with our CJD Fact Sheet.
  • Remember those affected by visiting the CJD Memory Quilt.
  • Wear purple to show your support!
  • Add the #CureCJD Frame to your Facebook photo.
  • Share your story on social media using hashtags: #CureCJD #CJDFoundation #RareDiseaseDay.
Monday, March 7, 2022 - 6:00pm

This group typically meets one Monday each month in Manhattan, but is currently meeting by phone, from 6 to 8 p.m.

Advance registration is required; email Help@CJDFoundation.org.

Tuesday, March 15, 2022 - 7:00pm

If you are currently caring for a loved one with CJD/Prion Disease, please join us for a Caregivers’ Support Group by phone.

Support Group discussion will be led by several family members who have cared for a loved one in the past.  Participants have the opportunity to share their questions and concerns and gain ideas and insights from the group.  Only CURRENT caregivers may register.

To register, please contact our Helpline at 800-659-1991.  We will share information and referrals with you, then qualify and register you for the caregivers group.

Monday, April 4, 2022 - 6:00pm

This group typically meets one Monday each month in Manhattan, but is currently meeting by phone, from 6 to 8 p.m.

Advance registration is required; email Help@CJDFoundation.org.

Tuesday, April 12, 2022 - 7:00pm

If you are currently caring for a loved one with CJD/Prion Disease, please join us for a Caregivers’ Support Group by phone.

Support Group discussion will be led by several family members who have cared for a loved one in the past.  Participants have the opportunity to share their questions and concerns and gain ideas and insights from the group.  Only CURRENT caregivers may register.

To register, please contact our Helpline at 800-659-1991.  We will share information and referrals with you, then qualify and register you for the caregivers group.

Monday, May 2, 2022 - 6:00pm

This group typically meets one Monday each month in Manhattan, but is currently meeting by phone, from 6 to 8 p.m.

Advance registration is required; email Help@CJDFoundation.org.

Tuesday, May 10, 2022 - 7:00pm

If you are currently caring for a loved one with CJD/Prion Disease, please join us for a Caregivers’ Support Group by phone.

Support Group discussion will be led by several family members who have cared for a loved one in the past.  Participants have the opportunity to share their questions and concerns and gain ideas and insights from the group.  Only CURRENT caregivers may register.

To register, please contact our Helpline at 800-659-1991.  We will share information and referrals with you, then qualify and register you for the caregivers group.

Friday, July 15, 2022 - 8:00am

The CJD Foundation's Family Conference, held annually in Washington, D.C., brings together prion disease experts and families affected by prion disease.