Raising 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.

• Check out our Twibbonize page for free social media photo frames!
• Use Canva? It’s free to sign up! We’ve made templates for awareness month (add a photo!), epilepsy awareness, CDKL5 awareness, and for birthday fundraising that you can customize for social media! We also have customizable awareness cards! Simply upload your child’s photo and print!
• Grab some CDKL5 Merch or CDKL5 Shirts/Hoodies/Tanks!
• 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.
• We are also always looking for photos of CDKL5 families and events.

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

By participating in policy advocacy, we can drive meaningful change and work to improve the lives of those affected by CDKL5 Deficiency Disorder.