Resources

Check out our patient information booklets created ‘by families, for families’ and presented in comic format.

• Life with r(20) syndrome. Zara’s Story: The Early Years
• Growing Up With r(20) syndrome

• For parent/carers
• For healthcare professionals

• Patient Journey
• David’s r(20) journey

Help promote awareness of r(20) syndrome by downloading our posters and putting them up in your local doctors surgery and/or hospital clinic

• Signs and symptoms of r(20) syndrome / Ring20 Patient Support Group
• Help solve the puzzle of r(20) diagnosis
• SUDEP

• Unique – Guide to r(20) syndrome for families
• Epilepsy Action: 20 Questions
• M4RD/Findacure Student Essay Competition: Helplessness

• Rare. The importance of Research, Analysis, Reporting and Education in ‘solving’ the genetic epilepsies: A perspective from the European patient advocacy group for EpiCARE
• Assessing the role of ketogenic dietary therapy in ring chromosome 20 syndrome: A patient‐led approach
• Life with r(20) – Ring Chromosome 20 Syndrome

Subscribe to our YouTube channel to view all our Ring20 videos here

Watch the full speaker presentations, interviews and Q&A from our 2017 Families Conference on our dedicated YouTube channel playlist