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), Purple Day for Epilepsy (Mar 26), World CDKL5 Day (June 17), Epilepsy Awareness Month (November).

June is CDKL5 Awareness Month. We are fortunate to have an entire month dedicated to CDKL5 awareness! In June, we work to educate about CDKL5 Deficiency Disorder and fundraise for needed research. 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.

• Check out our Twibbonize page for social media frames!
• Get info on how to share about the IFCR in our Talking Points Packet.
• Learn how to increase exposure for CDKL5 with our Media Toolkit and Proclamation guide.
• Help us Move CDKL5 Forward in June!
• We are also always looking for photos of CDKL5 families and events.

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

Policy Advocacy

Coming soon…