evenimente apwr

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 29th 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

Zilele Medicale Sălăjene

In cadrul Zilelor Medicale Salajene, peste 250 de medici din judeţul Sălaj au fost informaţi cu privire la activităţile APWR.
Activitatea a fost organizata de Colegiul Medicilor Salaj in parteneriat cu APWR. Am participat cu un stand de prezentare, am lansat raportul anual pe 2005 si Dr. Szekely Aurelia a prezentat Rolul Centrului de Informare pentru Boli Rare Zalau.

Salaj Medical Days

Within the Salaj Medical Days, over 250 doctors from Salaj County were informed about the RPWA activities. 
The event was organized by the Salaj Doctors Collegium in partnership with RPWA. We had a presentation stand and we launched our annual report for 2005 and Dr. Szekely Aurelia presented the role of the Information Center for Rare Diseases.

Cursuri de instruire pentru staff

La 31.03.2006, 2 membri ai echipei APWR au început cursurile de formare în asistenţă socială, nivel mediu.
La finalul cursului s-au primit diplome de calificare agreate de Ministerul Muncii.

The International Family Day

15 May, the International Family Day, was celebrated by the Department of Labor, Social Solidarity and Family together with RPWA, and we had a presentation of our activities from the point of view of the families having children with rare genetic diseases – 16 participants. 
The meeting was also attended by IPWSO representatives.