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CJD Foundation Mission Statement

The mission of the Creutzfeldt-Jakob Disease Foundation is to support families affected by Prion Disease, raise awareness, and support medical education and research.

We carry out this mission through:

  • Family support including a 7-day HelpLine, referrals, support groups, and teleconference speaker series
  • Education and information for families, caregivers, medical professionals, and funeral professionals
  • Advocacy with political representatives and public policy makers
  • Annual Family Conference that brings together affected families and prion disease experts
  • Family Workshops held around the country
  • Collaboration with scientists, clinicians, medical centers, health authorities, professional organizations, and international patient associations
  • Communication of current research and Foundation activities via newsletter, social media, emails, and family teleconferences
  • Research grant program, with international awardees selected by our Scientific Advisory Committee

Philosophy

The Foundation’s philosophy is to be proactive by establishing collaborations and linkages, communicating with family members, researchers, physicians and political representatives and informing the broader community about CJD.

Policy

Our policy is to offer support, information, and practical advice.
We do not offer opinions or medical advice.

Third-Party Accreditation from Charity Navigator

The CJD Foundation’s strong financial health and commitment to accountability and transparency have earned it a 4-star rating for five consecutive years from Charity Navigator, America’s largest independent charity evaluator. “It’s important our donors trust that we’re using their donations wisely to support families affected by CJD, provide medical education, and fund research toward curing Prion Disease,” said Debbie Yobs, President and Executive Director. “Our 4-star Charity Navigator rating demonstrates to our supporters our good governance and financial accountability.”

Privacy Policy

All information shared with the CJD Foundation is confidential and not used or shared without your written consent. For more detailed information, please view our privacy policy.