2. What is our association? And what is representing? Our association represents people from Carei and all around the country, as well as their families, diseased with Werdnig Hoffman Syndrome and other physical handicaps caused by a rare or common disease. The association was founded because I, myself have a physical handicap caused by a rare disease and I would like that together with all the members of the association to try to pull out the persons with disabilities from the anonymity in witch they live. Equally important is, that the parents of children with disabilities, to be able to conduct an exchange of experience, and equally important is for them to manage to co-operate with specialized doctor.
3. …so the aim of the Werdnig Hoffman Association is to…. ….to represent and support people with physical disabilities from Romania and their families, respectively to integrate persons with physical handicap in society!
4. Some objectives of our association… To organise information campaigns and provide counselling. To increase the awareness of the population regarding the specific issued children and adults with physical disabilities are confronted with, in order to protect them and integrate them in society. To collaborate with other similar organizations and people from the country and abroad, preoccupied by the same issues. To organise cultural and entertaining events, trips, etc. To train young volunteers for different kind of projects. To organise a sports club so that the association can participate at different sports events.
5. Activities 28 February The International Day of Rare Diseases Friday, 28 February, The Werdnig Hoffman Association together with the Municipal Culture House had organized the “Look beyond the appearances” campaign with the ocassion of The International Day of Rare Diseases. The event started with a prese conference at 2 o’clock at the Culture House Carei, where was present the mass-media, doctors, psychologists, the mayor Kovacs Eugen and other officials. From 4 o’clock in front of the Romanian Soldier Monument took place a cultural event with som recitals of children from diferent classes. And the culmination of the event was made by our presence at DumitruTimerman’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.
7. The official opening of the Werdnig Hoffman Association On the date of 15 January, in a small classroom from GrupScolarIuliuManiu hat taken place the official opening of the Werdnig Hoffman Association. 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 PraderWilli Association from Roamnia. Another person who was present was the president of the Physical Handicaps Association from Turda, Sav Gheorghe.At this opening were present some members of the association and the volunteers that joined to our main purpose in order to achieve it. Other activities…
9. Participating at the East-European Conference of the management of the Prader-Wili Syndrome In 24-25 april the Werdnig Hoffman Association was invited to participate at the East-European Conference in management of the Prader- Wili Syndrome by the PraderWiliAsociation Romania. Also at this conference was laucnhed the project “NoRo”. It was a good experience for us, because we are at the beginning of the “road”, but we managed to meet new people and share experience with others Other activities….
11. Having some fun at the Foieni forest… ;) We know that people with disabilities to have a decent life need care, good laws that help them to integrate better, new developments in genetics and many other things, but I think, and many other members from our association thinks so, that the most important thing of all is…THEY NEED TO HAVE FUN! So we decided, with some help from our volunteers and so called “good people” who sponsorized us to ensure for our members a beatyfull 1 of May day. So we all gathered at Urzicenivilage, who is situeted near the Foieni forest, and the program was the folowing, all of the members get in a cart pulled by horses and take a few hours trip in the forest. I can say, because me too was participating at this program, it was something to remember by. Then we all gathered and we set to a picnic and make some pictures, laughing, playing with the volunteers and when the sun sets down we all came back to Urziceni, but no one of us will forgott that day! Other activities…
13. “How children see people with disabilities” We think that it would be a great idea to make a contest in which the children could say how to they think the integration of the people with disabilities in society. So we told the teachers from some different schools to say to the children's that make some paint’s or some composition’s. And so we go to the different school’s and share price’s to the children’s. It was very interesting to see how children think. And we saw that they are opened for these people and they do see them just like normal people, who maybe just need some little help from the others. Thanks to our sponsor’s we managed to see how children thinks and with our prizes we managed to get some joy on their faces. Other activities…
15. Some ending words We hope that together we will indeed look beyond the appearances, we will manage to know each other better and that we will manage to create, in society, the correct image about what a person with disability truly means. And we are grateful to those who joined us and to those who will join us in this activity!
16. How can you contact us? by visiting our website www.werdnighoffman.ro by e-mail veres_robert@yahoo.com by phone +40744666715
