- Strengthen our status as a reference point for the various research teams and consider valid research projects;
- Promote the “National Registry for CDKL5 disease” as a useful and increasingly efficient instrument for the hospitals dealing with cdkl5 clinical records, for the researchers and the pharmaceutical companies in need of information;
- Promote a collective growth by creating instrument to support CDKL5 families;
- Create an International Registry for the disease together with the foreign association;
- Found the first Reference Centre for CDKL5 patients, for a complete assistance from diagnosis to polyspecialistic follow-up.
2018-02-01