Between 30 October and 1 November, members of the association PA.DI.SI.TO.
participated in the Fourth National Congress of Cornelia Delange, a rare disease that affects one of the families associated with this association.
The meeting, held in Zaragoza, welcomed around 40 families affected in Spain, and medical and research team working on this disease, gave an expected good news to all these families, as is that at last will be able to have a reference center for this disease, located precisely in Zaragoza.
This represents a major step in treatment and research of this disease as well as a reference point for different doctors and specialists who have patients with this syndrome all over Spain.
But undoubtedly, the biggest beneficiaries of the creation of the Reference Center will be the affected people themselves and their families who will receive an individualized evaluation and treatment as being a syndrome whose symptoms are very diverse, requiring a personal study of each patient.
And for this Reference Center Cornelia De Lange Syndrome is a reality has required the support and assistance of the Ministry of Health and the Government of Aragon.
On the other hand, noted that participants in this meeting PA.DI.SI.TO. member
could interact and learn about treatments that are carried out in other parts of Spain with reference to this syndrome, as well as medical and research advances made in this area.