THE CDKL5 ALLIANCE
~ A WORLD UNITED IN HOPE
CDKL5 Deficiency is a rare X-linked genetic condition which results in early onset, difficult to control, seizures, and severe neuro-developmental impairment. Due to the location on the X chromosome CDKL5 deficiency affects more girls than it does boys.
Click here to learn more about the CDKL5 gene and CDKL5 Deficiency
OUR VISION
A world where every person affected by CDKL5 Deficiency is supported, connected, heard, and able to pursue a brighter future
through a united global community of hope.
OUR MISSION
CDKL5 Alliance unites families, advocates, researchers, and clinicians from around the world — connecting everyone with information, support, and
collaboration to accelerate awareness, research, and progress toward a cure.
We organize ourselves around three pillars
COLLABORATION
Bring CDKL5 advocacy groups together worldwide. Support new groups, help families start organizations where none exist, and strengthen every group through shared learning and collaboration.
RESEARCH & CARE
Support the people working to improve life with CDKL5 Deficiency. Connect
families with research opportunities, encourage strong clinical care, and speak with one united voice to drive progress.
AWARENESS
Shine a light on CDKL5 Deficiency. Help advocacy groups find families, grow
their fundraising, and raise visibility so more people understand and support
this community.
Our Member Organizations
The CDKL5 Alliance is made up of Member Organizations representing countries around the world. Together, we form a connected and collaborative global network, united in our mission. See our Members Page for a list of all current members.
Our Leadership Board
The CDKL5 Alliance Board is guided by a small, dedicated working group united by a shared purpose- fostering connection, sharing knowledge, and strengthening the global CDKL5 community. We actively support new and emerging groups and welcome organizations from any country to connect and become part of the Alliance.
