Goals for the Future

  • 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.