About CDKL5 in Color
We began the CDKL5 in Color podcast in November 2024 as a passion project with the aim of reaching CDKL5 families outside traditional social media. While our community Facebook support group is a lifeline, parents who do not wish to be online are missing out on valuable knowledge shared by their peers. We wanted to bridge the gap so that these caregivers also have access to peer insights.
The response we've had has been beyond expectations and has reinforced for us the need to meet families in as many different spaces as possible! Do you have a message you want to get out in front of the CDKL5 community? We can help!
We are passionate about:
- Fostering connection: Our podcast provides a space for families to hear about the experiences of others, which can be difficult to find organically in a rare disease community.
- Raising awareness: By sharing diverse community stories, our podcast increases awareness of the real-world challenges of living with CDKL5 Deficiency Disorder, such as navigating social systems and managing complex care.
- Encouraging participation: We are proud that our podcast serves as a touchpoint for the CDKL5 community. We’re not only helping families navigate life's challenges, we’re also informing them about advocacy and research opportunities.
- Providing patient-centered insight: By focusing on the lived experiences of caregivers and patients, our podcast helps researchers and pharmaceutical companies understand what matters to families.
We are DEE-P Connections and Seizure Action Plan Coalition partners!
