kleefstraitalia.org

The Kleefstra Syndrome Association is an Italian community supporting people and families affected by Kleefstra syndrome, a rare condition associated with deletion or mutation of the 9q34.3 region and the EHMT1 gene. Guided by the motto “Drop by drop, a river is born; step by step, we go far,” the association brings families together to share support, raise awareness and promote a better future for those living with the syndrome.

Its activities include organizing national conferences, sharing information and resources, and connecting families with clinicians, researchers, educators and rehabilitation professionals. Events address research, genetics, behavioral and psychological aspects, sensory differences, rehabilitation and inclusive schooling. The association also highlights international guidance and Italian research initiatives, including the “Drop-by-Drop” project, and provides useful links and organizational documents through its website.

Through community events, information articles and fundraising appeals, including Italy’s 5×1000 tax-donation scheme, the organization encourages solidarity and helps amplify the needs of people with Kleefstra syndrome.