On June 1-5 in Barcelona campus of the Autonomous University of Barcelona in the conference –hall of the  hotel “Campus” there was held the Summer School organized by Eurordis Rare Diseases, Europe.

      The program of the potential for patient representatives and researchers on the information and access to orphan diseases, orphan pediatrics, treatment and health technology assessment was considered during Eurodis Summer School.

Program Committee was represented by  Annemieke Aartsma-Rus, Nathalie Bere, Monica Ensini, Nathalie Goemans, Virginie Hivert, François Houyez, Yann Le Cam, Josep Torrent, Elizabeth Vroom.

The event organizer is Nancy Hamilton –  Eurodis Training Manager and Iolanda Arbiol, the local organizer.

       Patient Organizations of rare diseases from around the world had the opportunity to present their country, organization, their rare disease. They also had the opportunity to express expectations from Eurodis Summer School, to  share experience with each other and talk about the achievements they achieved in their activity.

       Representatives of the Foundation of “Sister Dalila” had the opportunity to present the problem of pulmonary hypertension of Ukraine at European level.

We have a lot of work in front of us, but only due to our common efforts, together with you, we can improve the situation of patients with pulmonary hypertension in Ukraine.