CCDS Expert Panel

CCDS Expert Panel: Community Webinar Series

Next Meeting: Sprint 2025

Goal: Increase understanding of CCDS in the patient, caregiver, and clinician communities and connect clinicians worldwide to create a clinician network for support.

Agenda: This quarterly webinar series presents CTD, GAMT, and AGAT case studies developed through our PCORI funded PaReNts Project, with a focus on caregiver concerns. Panel discussions are led by Dr. Sylvia Stockler and world-renowned experts from the field of CCDS. Additional guest panel members attend as relevant to the cases being discussed.

Clinicians and parents in attendance can post questions in the chat and observe the panel discussion live. Recorded discussions include a summary slide of the experts’ discussion. To hear the full discussion, be sure to attend the live meeting.

Ask The Experts: If you would like the panel to possibly discussion a question you have about AGAT, GAMT, or CTD, submit your question here.

CCDS Patient Success: We will be highlighting success stories from our community during the Expert Panel meeting. If you’d like to share a recent accomplishment or success story, you can submit it here.

Previous Panel Recordings


*Signing up for this event means you will receive an invitation to all future CCDS Expert Panel Community Webinars. You may opt out at any time by emailing faith@creatineinfo.org.

**The aim will be to discuss potential approaches to improving care of the CCDS patient. Discussions are not meant to be used as medical advice. Always speak with your clinician prior to making changes in care.