Group of patients with Thalassemia Major

In 2012, the first group of patients affected to come to the Center for Rare Diseases NoRo, was organized during 30.01 – 03.02.2012, and consisted in 11children affected by Thalassemia Major and one attendant. During the 5 days of activities, they benefited of interdisciplinary evaluation, recovery through physiotherapy, hydrotherapy, occupational therapy and instruction in different social, psychological and medical themes. With the organizing of this group, the Prader Willi Association from Romania also started the campaign dedicated to the Day of Rare Diseases, this being set at a European level, on 29^th February.

Through the equipment we have at the NoRo Center and with the support of specialists from the University of Medicine Timisoara, we managed to organize the first videoconference, in which the patients from the NoRo Center could benefit of medical training from the best specialist from Romania in this field, Dr. Serban Margit.

In the organizing this kind of groups, we started from principles, according to which, the information in the area of rare diseases is essential for the patients with rare diseases, and the recovery process has to be a continuous activity that the patient needs to learn with the support from specialists, and then to practice it in everyday life.

We consider that the objectives that the team of specialists have set on the organizing this group have been met, all the patients being satisfied with the informing and training services they benefited, especially because the information received have an immediate applicability, in order to overcome the difficult situations they face daily.

Maria Brazdau, social worker, NoRo Center