evenimente apwr

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.

Întâlnirea membrilor Eurordis, Berlin, 5-6 mai 2006

Mai mult de 180 de reprezentanti ai organizatiilor de pacienti cu boli rare s-au intalnit la Berlin in 5-6 Mai 2006. Programul intalnirii a cuprins organizarea Adunarii Generale Anuale si Conferinta despre Bolile Rare, cu trei workshopuri:
- centrele de referinta;
- baza de date si registrele de pacienti;
- proiecte de cercetare organizate de pacienti;
Am avut ocazia sa intalnim organizatii din intreaga Europa si sa participam la un cocktail gazduit de Mrs.Köhler (Prima Doamna a Germaniei) la Bellevue Castle din Berlin.

Multidisciplinary Approach Of Rare Diseases

RPWA organized in partnership with OAMMR – The Organization of Medical Nurses and Midwives Romania a scientific meeting on: “An interdisciplinary approach of rare diseases”. 
The meeting took place at the RPWA headquarters and there were 74 participants: medical nurses, doctors, social workers, the vice-mayor, the Salaj ANPH Inspector, representatives of MMSSF and DASC. Also, we had members of ROAD England.

Grup de suport pentru copiii cu diabet zaharat de tip I

A fost creat un Grup de suport pentru copiii cu diabet zaharat tip I. Astfel, la 23.02.2006, a avut loc o întâlnire cu aceşti copii, însoţiţi de părinţii lor. La întâlnire au participat
- 3 copii cu diabet zaharat tip I
- 3 părinţi
- 2 medici specialişti
- Inspectorul Judeţean ANPH
- alti specialisti;

În cadrul acestei întâlniri a fost vizionat un film despre diabetul zaharat tip I la copii, iar apoi au avut loc discuţii cu d-nele doctor Costinaş şi Szekely, care au răspuns întrebărilor pacienţilor şi familiilor lor.

Meeting With Eurordis Members, May 5-6 2006

More than 180 representatives of rare diseases patients organizations met in Berlin on May 5-6 2006. The program of the meeting consisted of the organization of the Annual General Assembly and the Rare Diseases Conference, with 3 workshops:
- reference centers
- data bases and patients registries
- research projects organized by patients
We had the opportunity to meet organizations from all Europe and to participate to a cocktail dinner hosted by Mrs. Köhler (The First Lady of Germany) at Bellevue Castle in Berlin.
 

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