Keep Rockin’ Cleveland 2024 Conference - Join us June 13th-15th - Learn more and register at this link.

CDKL5 Advocacy

Raise Awareness

Raising awareness and educating others about CDKL5 Deficiency Disorder is one of the most important things you can do! Any time is a good time to spread #CDKL5Awareness, but there are some dates where sharing about our rare disease is particularly powerful: Rare Disease Day (Feb 28 or 29), CDKL5 Awareness Month (June), World CDKL5 Day (June 17), Epilepsy Awareness Month (US) (November), #GivingTuesday (Tuesday after Thanksgiving).

June is CDKL5 Awareness Month! Help us educate about CDKL5 Deficiency Disorder and fundraise for needed research. Join us for our annual Move CDKL5 Forward virtual event! We need all the help we can get! Why June? June has special meaning to the CDKL5 community and we recognize June 17th as World CDKL5 Day because of Glyn and his lovely family. Read his story.

Whatever you choose to do to spread CDKL5 awareness, we’d love to hear from you! Please tell us what you are up to and tag us when you post on social media. We’d love to share your efforts!

Policy Advocacy

Coming soon…