IFCR CDKL5 Guides
Recommendations for managing individuals with CDD
Available in Multiple Languages: International Consensus Recommendations for the Assessment and Management of Individuals With CDKL5 Deficiency Disorder Read More...
Living with CDKL5
Available in Multiple Languages: This guide removes the American-centric content of the guides below to offer a condensed version of information important to all families regardless of where you live. Read More...
CDKL5 Guide for Parents
Everything you need to know about CDKL5 Deficiency Disorder. Read More...
Finding Your New Normal
Handling the life and family stresses of CDKL5 Deficiency Disorder. Read More...
Medical Advocacy
How to advocate for your child in the medical system. Read More...
Educational Advocacy
How to advocate for your child in the school system. Read More...
Transition to Adulthood
Caring for your child with CDKL5 Deficiency Disorder at age 18 and beyond. Read More...
Clinical Care Guide
Learn about the CDKL5 Deficiency Disorder symptoms, treatments and therapies. Read More...
CDKL5 Resources
- The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses
- Seizure Action Plans
- CVI Now from Perkins School for the Blind
- Courageous Parents Network – Palliative Care & Hospice Information
- 5th International CDKL5 Family Education & Awareness Conference
- Patient-Focused Drug Development Meeting
- Denver Conference Recordings
- CDKL5 International Registry Database Output Tool
- Check out our YouTube channel!