evenimente apwr

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.


Grup de suport - Sindromul Down

A fost creat un Grup de suport pentru copiii cu Sindromul Down. Astfel, la 04.04.2006, a avut loc o întâlnire cu aceşti copii, însoţiţi de părinţii lor. La întâlnire au participat :
- copii 
- părinţi
- 2 medici specialisti si un psihiatru;
- Inspectorul Judeţean ANPH
- Reprezentantul Asociaţiei Caritas – BACH.
- un profesor si un psiholog de la Scoala Speciala Speranta;
- reprezentanti ai Asociatiei "Sindromul Down" Cehu - Silvaniei; 

S-au prezentat informatii despre boala, s-au discutat diferite aspecte cu care se confrunta parintii in viata de zi cu zi si s-a demarat un grup de suport.

Support Group For Children With Diabetes Type I

A support group for children with diabetes type I was created. On 23.02.2006 a meeting was organized with these children and for their parents. The following participated: 
- 3 children with diabetes type I 
- 3 parents
- 2 doctors
- ANPH county inspector
- other specialists;
Within this meeting a film was presented about diabetes type I at children and then discussions took places with doctors Costinaş and Szekely, who answered the patients’ and families’ questions.

Ziua internațională a familiei

Ziua Internationala a Familiei, 15 mai, intalnire organizata de DMSSF Salaj - APWR a avut o prezentare a activitatii sale, din punctul de vedere al sprijinului acordat familiilor persoanelor afectate de boli genetice rare – 16 participanţi.
La intalnire au fost prezenti si reprezentantii IPWSO.

Support Group - Down Syndrome

A support group for children with Down syndrome was created. On 04.04.2006, a meeting took place with these children and their parents: 
- children 
- parents
- 2 doctors and 1 psychiatrist;
- ANPH County Inspector
- Caritas Association – BACH representative.
- a teacher and a psychologist for the Special School Speranta;
- representatives of the Down Syndrome Association Cehu. 

Information about the disease was presented and various everyday life issues were discussed within the support group.