Why start a CDKL5 podcast?

CDKL5 in Color is a passion project that stems from us wanting to do more to amplify CDKL5 and to connect with other diagnosed families who might be looking for support out in the world of podcasts. Like other rare diseases, you’re not going to just bump into someone in the store who knows CDKL5 or find people by chance. You really need to seek out members of this CDKL5 community for that connection. We hope our podcast provides an avenue to do that.

SHOW NOTES

Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!

Check out our website ⁠www.CDKL5inColor.com⁠

Email us to be on the show! [email protected]

MENTIONED IN THE EPISODE:

• Poem “Patchwork Heart” by John Roedel
• CDKL5 Patient Focused Drug Development meeting with the FDA (2019)
• Katie Beckett Waiver

STORYTELLING RESOURCES:

• Global Genes “Using Storytelling to Raise Awareness for Your Rare Disease” 
• Rare Action “How to Write a Patient Story”
• NIH “Communicating About Rare Diseases"
• Rare Disease Film Festival “The 8 Stages of Rare Disease Advocacy”