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CDKL5 Alliance

The CDKL5 Alliance for formed in Rome in 2017 at the 4th International Congress for CDKL5 Research. The Aim was to form what was coined as the “perfect alliance” – an membership organisation which would raise awareness of the condition amongst the medical, scientific and pharmaceutical communities, whilst ultimately supporting our children and families.

The world-wide CDKL5 community is spreading, many patient organisations are now fundraising and funding vital research whilst also caring for their loved ones living with CDKL5 deficiency and this is the right time to stand up “together” for our common goal.

The CDKL5 Alliance mission is:

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.

The CDKL5 Alliance currently have 14 active patient group member organisations from around the globe which include: UK, USA, Ireland, Canada, Italy, Spain, Netherlands, Germany, Austria, Switzerland, Slovakia and Japan.

Every year the chairmanship, and secretary of the Alliance will rotate and will be agreed at the Annual meeting which is held at the International conferences held in Europe or the USA. These conferences have now synced and take place every year but rotating between Europe and the USA. You can view upcoming conferences and meetings in our events section.