The story of Sebastian
Our two-year-old daughter has the Kleefstra Syndrome.This rare disease of genetic origin affects the neurological development and has currently no cure or treatment. Our dream, like that of many parents, is to find a cure for this syndrome. There is still a long way to go, but we are sure that if we can make progress in improving medical care and developing specific treatment if families, doctors and researchers work together.
My wife, who is a scientist, created a new platform with the aim of building bridges and strengthening collaborations between these three communities. Click here to visit and her blog and to learn more./
The Kleefstra syndrome is a relatively young syndrome and it is necessary to continue to put efforts into the training of families, the training of doctors and dissemination among the scientific community in order to promote research.