Sheba Medical Center Marks the International Day of Rare Diseases

In 2014, a unique, one of a kind institute for rare diseases was established under the direction of Prof. Annik Raz-Rothschild, working in close cooperation with specialists of the Edmond and Lily Safra Children's Hospital.

At present, there are about 7,000 different, known rare diseases and their prevalence worldwide is estimated at 5-8%. The complexity of this kind of diseases is that they occur and affect only a limited number of people, which makes the diagnosis very difficult and causes a lot of frustration for the patients and their families

The International Day of Rare Diseases took place on February the 29th, 2016, which is by itself a rare date because it occurs only every four years. In honor of this special day, the Sheba Medical Center held a conference dealing with a variety of subjects in the field of rare diseases, such as a system providing disease related information (orphanet); difficulties in treatment and follow-up of these diseases; complexity of diagnosis and treatment of adults, and more.

Also parents of children with rare diseases participated in the conference and were given the opportunity to tell their side of the story, their difficulty of coping with such a disease.