Medical literature usually defines Gorham’s Disease as a disorder of unknown origin, difficult diagnosis, unpredictable evolution and whose treatment is usually little effective.

However, angiogenesis investigation evolves rapidly offering progressively information that brings the medical community closer to the disease’s etiologic key.

Similarly, the setting up of various multidisciplinary teams across hospitals all over the world dedicated to the diagnosis and treatment of vascular anomalies, resulted in the disease being identified earlier and that treatment protocols be more efficient. The number of scientific publications and clinical trials increased significantly over the past few years.

The definitive step in improving the lives of affected patients is to unify efforts. Patients’ associations help by exchanging information and facilitating the consultancy with specialists and treatment in medical centres of reference. Their role is fundamental in improving the knowledge of the disease, facilitating scientific knowledge exchange, raising funds for investigation and treatment purposes, and facilitating psychological assistance to patients and their relatives.

There is increasing evidence that the disease’s occurrence is much higher than initially thought and the number of those affected by the disease worldwide is rather by several thousands than by a few hundreds. We need to create awareness amongst health authorities of the importance of the problem, of the need to facilitate administrative procedures for the free movement of patients and at the same time, facilitate the treatment for patients coming from developing countries where access to a suitable treatment through qualified experts is practically impossible.

Investigation experts, practising doctors and affected families all have the obligation to work together to overcome current expectations on the disease, until today pessimistic, and get rid of mortality, reducing to the maximum the morbidity of a disease before unknown and shortly curable.

JC Lopez-Gutierrez MD PhD

Vascular Anomalies Center

Hospital Infantil La Paz

Madrid. Spain