You are invited to participate in a new research study that will collect information about changes in your child's functioning that would be important for their quality of life.
Current research is aiming to develop valid outcome measures for individuals with CDKL5 Deficiency Disorder for measuring change and progress in upcoming clinical trials. However, there is limited understanding of the changes in a child's functioning that are meaningful and important to families with new treatments.
This online questionnaire should take you approximately 15 to 20 minutes.Please complete the questionnaire at one time as you cannot save and go back.
If you attended the session on meaningful change at the Keep Rockin' Conference in June, you may have already completed this survey. It is now open to additional respondents.
It's back-to-school time and for students with CDKL5 Deficiency Disorder, it is a time to ensure all medical orders, including a Seizure Action Plan, are up-to-date. You can find samples of Seizure Action Plans HERE.
Looking to share about your child with their school or other care team? We have a template presentation you can customize!Email Paul (pmiller@cdkl5.com) to access the template.
Now Available on YouTube - Keep Rockin' Conference Playlist
We are pleased to share that two video recordings from the 6th CDKL5 Family Educational & Awareness Conference are now available on our YouTube channel.
The C.A.R.E Binder is an interactive, fillable PDF resource for families who are Caring for Adults with a Rare Epilepsy.
Made possible through UCB funding and partnership, this resource has been created to support families as they begin to work through long‐term adult care planning for their loved one with a rare epilepsy like CDKL5 Deficiency Disorder.
Learn more about this special resource and how it might be useful in your caregiving toolkit HERE.
We know you have questions as your loved one approaches adulthood or is an adult already. Join IFCR for an open discussion and opportunity to share and learn from one another. Two opportunities available. Please click to register in advance.
CDKL5 All (IN)VOLVED Conference June 27-29, 2025 | Rome, Italy
See event flier.Organized by CDKL5 Insieme Verso la Cura (Italy) in collaboration with CDKL5 Middle East and North Africa – MENA, the 2025 CDKL5 ALL (IN)VOLVED Conference will be held in Rome, Italy.
If you plan to attend, the organizers ask that you please complete this form no later than September 30, 2024.
#CDKL5Awareness
Judith's Story - Strength in Struggle - CDKL5 is a video about Kaitlyn and her daughter Judith. A beautiful look into their life with CDKL5.
Come Chat with Us!
Join us on Aug 29 at 7ET for a "CDKL5 Chat" hosted by our Family Support Rep program.
We know how hard life with CDKL5 can be and we are here for you whenever you need us.
Would you like to speak with a fellow CDKL5 parent who knows what you're facing? We have peer caregiver support volunteers who are available to offer a listening ear or resources that can help.
Does your loved one with CDKL5 have a sibling? Request a "VIP Sibling" kit for them! This program helps celebrate rare epilepsy siblings for the unique experience they have.
Did you know? Our website is a great place to learn what clinical trials are enrolling for CDKL5!
There are opportunities for interventional trials as well as clinical research, including ways to participate in CDKL5 research from your home, anywhere in the world!
This information and even more can be found on our website. Check back frequently for updates as new opportunities emerge!
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Have you joined Connect CDKL5?
Connect CDKL5 families receive direct communication about clinical trial opportunities for CDKL5 and other information important for families.
