Community-first

Resources for parents and caregivers

We celebrate your expertise, resilience, and advocacy. This hub curates scientific explainers, care coordination tools, and peer networks helping 500+ families in 45+ countries.[3]

📋 Join the CDKL5 Patient Registry

Register your family to help advance gene therapy research and stay informed about clinical trial opportunities.

Register Now
✓ Clinical trial updates
✓ Research participation
✓ Community connection

Essential resources

Newly diagnosed toolkit

  • Step-by-step guide from CDKL5.com covering seizure management and therapies.[3]
  • Caregiver glossary translating genetic and clinical terminology.
  • Template letter for coordinating early intervention services.
Visit CDKL5.com

Connect CDKL5 community

Private platform uniting 500+ families sharing care protocols, insurance tips, and travel hacks for clinical visits.[3]

Join Connect CDKL5

Stories of resilience

"When we joined the gene therapy coalition, we finally saw a roadmap for our daughter. Science plus community equals hope." — Parent advocate, USA

Submit your story to inspire donors and new families.

Share your story

Centers of Excellence

Coordinate care with multidisciplinary teams experienced in CDKL5. Contact us for referral introductions.

Clinical trial readiness

We coordinate travel stipends, accessible lodging, and telehealth pre-screening. Our trial concierge helps families prepare for Q2 2026 enrollment.

Email trialsupport@cdkl5genetherapy.com for assistance.

Stay engaged

Progress to CDKL5 Gene Therapy!
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