CDKL5 Deficiency Disorder
Our families have put together some case studies based on their experiencing of raising a child/young person or adult with CDKL5 deficiency you can read more here.
Click to find out more about CDKL5 deficiency events which are organised by our CDKL5 Alliance members and other organisations within the community.
Cooperation: Provide an environment for communication and collaboration between CDKL5-related patient advocacy groups (PAGs) around the world, helping newer groups grow, helping parents in countries without a PAG to create one, and helping all groups be more effective.
Research and care: Encourage and aid researchers, pharmaceutical companies, and clinicians in their efforts to treat CDKL5 Deficiency by communicating about research plans, fostering the creation of Centers of Excellence, helping pharmaceutical companies find potential trial participants around the world, and serving as a collective voice of families living with CDKL5 Deficiency.
Awareness: Create awareness of CDKL5 Deficiency by helping member PAGs identify patients in their countries, develop better methods of fundraising, and generate publicity for this disorder.