Results

The several fundraisings we promoted during these 2 years of activity let our organization to:

  • Support several research projects by giving 239000 euros to Bologna e Milano Universities and by establishing 3 annual allowances for research;
  • Launch the “National Registry for CDKL5 disease” project, an important tool for pharmaceutical companies and for research groups, too;
  • Arrange the 4th International Congress for CDKL5, which will took place on the 2 and 3 of June, a meeting place for researchers, pharmaceutical companies, European associations, doctors and therapists; 

Furthermore our association managed to:

  • Create the first Solidarity Network between CDKL5 families;
  • Create much more consciousness and knowledge about the pathology thanks to the website www.cdlk5insiemeversolacura.it and the Facebook page, which is constantly growing (3200 followers to this day);