Connecting families
We create space for conversation, shared experiences and mutual support.
Stronger together
Together for people
affected by CDKL5.
We support, connect and represent people affected by CDKL5 deficiency disorder and their families.
01Family support
02Knowledge and education
03Building community
04Awareness and change
CDKL5
What is CDKL5?
CDKL5 deficiency disorder (CDD) is a rare neurodevelopmental condition associated with changes in the CDKL5 gene. It can cause seizures beginning in infancy and challenges with development, movement and communication. Symptoms and individual support needs vary.
This information is educational and does not replace medical advice. Medical reference ↗
About us
About our association
We are building a place where families affected by CDKL5 can find understanding, information and connections with others who share similar experiences.
- We support families and share experiences.
- We promote reliable information about CDKL5.
- We connect people who care about this community.
- We raise awareness of the needs of people with CDKL5.
CDKL5 Polska
What we do
We work together to raise awareness and build a stronger community.
Sharing knowledge
We help families find trustworthy information about CDKL5 and everyday life.
Raising awareness
We highlight the issues that matter to people affected by CDKL5 and their loved ones.
Facebook
From our community
Examples of educational materials shared by the association.
Let’s stay connected.
Have a question, want to share an experience or explore a partnership? Write to us.