The campaign “Look beyond the appearances”

28 February The International Day of Rare Diseases

Though the day was held only in 28 February, the whole activity started with a day before, when we were invited at the radio broadcast presented by Bogdan Georgescu, where a publicity of this important day was made.

Friday, 28 February, The Werdnig Hoffman Association together with the Municipal Culture House had organized the “Look beyond the appearances” campaign with the occasion of The International Day of Rare Diseases.
 
His event started with a press conference at 2 o’clock pm at the Culture House, where among the participant were present the mass-media, doctors, psychologists, the mayor Kovacs Eugen, the officials of different ONG’s from the district and some members of the Werdnig Hoffman Association. At this conference many issues were discussed, one of them being the problem of the residence and the other one was the problem of the persons with disabilities and the integration of them into society. At the end of the conference a short movie was presented about rare diseases.
From 4 o’ clock, in front of the Romanian Soldier Monument, has taken place a small cultural event, where children from different classes made a poetry recital, danced and also sang. Between these events a presentation of the associations’ members was made. First, Veres Robert, the president of the association held a speech, after that the volunteers of the association spoke and the president of the Physical Handicaps Association Crina Pop read short a poetry written by her. Though the weather was not by our side, we can say that this event vas a success from all point of views. At this event approximately 50 persons participated, which is not a large number of people but considering that the association is only at its beginning, we are looking with optimism this number of persons. We managed to distribute flyers of our association and as well of the National Alliance of Rare diseases from Romania.
 
And the culmination of the event was made by our presence at Dumitru Timerman’s emission, “Incursion into the everyday’s”, diffused on Nord Vest TV Satu Mare , where for about an hour we discussed firstly about rare diseases and secondly about the Werdnig Hoffman Association and the National Alliance of Rare Diseases. The fact that we were invited to Nord Vest TV was a great success because the emission is highly watched in Satu Mare.

And now… some impressions. The first and the most important is that we observed that the mass-media from our district is very opened to the problems of the persons with disabilities, firstly the local newspapers, that had published all kind of articles  before the organization of the event and even after it’s succeeding. Secondly, the radio broadcasts, which agreed to diffuse the spots received from the National Alliance of Rare Diseases from Romania with the occasion of this international day which celebrates the rare diseases. And another impression is that even if we are at the beginning of this road, I can say that it is a good beginning for the Werdnig Hoffman Association from Carei.

We can only thank to everybody who participated at this event, to those who supported and helped us to accomplish this event, and here a refer specially to the Culture House from Carei for the organization of the conference and the cultural event and as well to S.C. Sira Cons S.R.L. who helped us in printing the flyers. As well I want to thank to those who in the future will help us to reach as far as possible on this road that we began.

The official opening of the Werdnig Hoffman Association

15 January 2009
On the date of 15 January, in a small classroom from Grup Scolar Iuliu Maniu hat taken place the official opening of the Werdnig Hoffman Association. This association tries to bring together as many members as possible from the district and from everywhere. It will try to promote the rights of these members,to support them and to integrate them into society. It was founded on the initiative of three persons and there three persons are : Veres Robert, who is the president of this association, Veres Sanda – vicepresident and the psychologist Fericean Luciana.
 
We were glad to see that at this opening many guests were present. Among others, there was Dorica Dan too, the president of the National Alliance of Rare Diseases from Romania and as well the president of the Prader Willi Association from Roamnia. Another person who was present was the president of the Physical Handicaps Association from Turda, Sav Gheorghe.

As well, at the opening have participated the directors of Grup Scolar Iuliu Maniu, the officials of the local committee, some officials of the local mass-media and the officials of our sponsor S.C. Sira Cons S.R.L.
At this opening were present some members of the association and the volunteers that joined to our main purpose in order to achieve it.

We want to thank to the participants and we hope that we will have a good co-operation with them in the future.