This week is Children’s Mental Health Week, a time when we are reminded of the unique challenges children and young people whose families are impacted by CJD and prion disease may face. In our 2024 Support Survey, one respondent shared:
“I haven’t seen any support for children. My daughter lost her grandmother to CJD.”
At the CJD Support Network, we hear you. That’s why we’re working closely with clinicians at the National Prion Clinic to develop resources designed to help parents, families, schools and young people navigate these challenges. Watch this space for updates.
Looking ahead, we want to hear more from you. Our 2025 Support Survey is now live—please take a moment to share your thoughts and help us shape future support services. Click HERE to access the survey.
