News



It was a great event :-)!

posted Feb 6, 2017, 8:01 AM by Gábor Pogány   [ updated Feb 6, 2017, 8:06 AM ]

In order to promote the quality of life of rare disease patients living with Williams syndrome, we organized an international special development camp, which strengthens the autonomy of the participants. On the one hand, we introduced our EU award winning special educational and vocational programme, embedded into community building elements. On the other hand, we shared our experiences in supporting the more independent life of young people with intellectual disabilities.

With involving all the V4 countries, we could produce international, non-formal educational activities, promoting a better understanding of the diversity of our common European culture and shared heritage, as well as of our common basic values. The participating WS organizations have similar problems in this region, and could also change best practices and develop together the future of WS peoples.

You can see the short film and some photos about the camp at the bottom of the home page.

We will organize again a special international WS camp for V4 countries

posted Jun 7, 2016, 1:10 AM by Gábor Pogány

We want to share our experiences in supporting the more independent life of young people with intellectual disabilities. The project is planned to be realized in a frame of co-operation of Williams Syndrome (hereinafter: WS) Associations of V4 countries. The goal is an integrated development program to increase intellectually disabled youth’s access to equal opportunities. We just finished the big project of “Leaving the Nest”, a complex training program for disabled young people and their parents for increasing the autonomy and the independency through work and practical tasks of event organisation. We would like to share our experiences and exchange the best practices with our V4 partners.

Moreover, a whole week of concentrated therapy – by improving the facilitation - rehabilitation of the participants with accumulated disabilities - will promote the social reintegration and recreation of the different associations’ members, while community programmes will give opportunities for free expression of their sense of solidarity. Meanwhile campers over 16 yrs. will participate in international „individual living” workshops, covering several topic-related fields. We also want to provide practical opportunities for integrated event organizing activity during this special camp. The Hungarian group of young campers were trained for over the past year.

European Williams Syndrome Conference with the support of Visegrad Fund

posted Sep 15, 2014, 7:21 AM by Bea Boncz

The European Federation of Williams Syndrome (FEWS) organises in cooperation with the Hungarian Williams Syndrome Association (HWSA) a European Conference on Williams-Beuren Syndrome to raise the awareness on this rare disease, make the stakeholder groups more interactive and establish international cooperation on expert field. 

The previous European Williams Syndrome Conference was organized in Paris in 2008. The member associations of FEWS realized this long gap which makes necessary to organize a meeting again, as the development of science is rapid in the area of Williams Syndrome (WS) as well. The most recognised speakers of Europe will exchange ideas with not only the experts of European Countries, but also with the families, coming mainly from the new EU Member states.

The focus is to share good practices and knowledge on the disease between European Countries with a good expertise and other European Countries with lesser experience on the syndrome. The ultimate goal of the Conference is to help patients with WS have a better life by promoting or improving better care, including those elements which may integrate with the EU policy on rare diseases.

The Conference targets professionals in different areas from different countries, who, by their professional position, have an impact on spreading the awareness and knowledge about Williams syndrome. We would like to establish a network with the leader European experts of the area with high international reputation as well.   

Participants to the Conference will be relevant stakeholders, i.e. representatives of healthcare professionals and caregivers, politicians, patient organisations, researchers and academics, national authorities, medical societies, health industry, media, etc. We especially target professionals in countries with rather limited knowledge about the syndrome to spread awareness.

The Conference language is English. 

The Conference starts on Friday evening 21st and ends on Sunday 23rd November, 2014. The venue is Hotel Benczur in Budapest, Hungary. 

The following topics are presented during the Congress: paediatrics, cardiology, genetics, education, dental care, psychology, psychiatry, linguistics, music therapy, pharma research, sleeping problems, etc. 

A Poster Session is also planned. 

We hope that this Conference will provide edification for all participants in the interested fields.

More information on the event webpage: conference2014.eurowilliams.org

Results of the Photo Contest 2013

posted Sep 23, 2013, 12:44 AM by Bea Boncz   [ updated Sep 23, 2013, 12:55 AM ]

Here are the results of the Photo Contest.:) We closed to count the votes at 15/09/2013 and we had a strange surprise. Balazs Boncz won 3 from the 4 categories so we decided to change the rules a little bit. So One Person could win only in one category and if the votes are equal dr. Ilona Kovats (psichologyst and fan of the photo art) decide. Ilona also helped to collect the photos for the exhibitions. So the final results are: 

In Friendship Category: Nóra Viola Pap - Leaders of the Game c. fotója (35 like)
In Family Category: Balázs Boncz - Mother and Daughter (42 like)
In Movement Category: Péter Szentpáli - Swing (8 like)
In Challenge Category: Wojciech Front – Almost done (16 like)

Congratulation for the Winners!:) But do not be upset if you didn’t win this time, because we have extra pizes from Morgan Stanley, Nikon and Canon. At the end of the week they will say their decision. So don’t give up!:) 

And here are the exhibitions exact details:
Morgan Stanley Exhibition in their Office (1095 Budapest Lechner Ödön fasor 8.) 26/09/2013 16-17:00. It is a closed event where they pronounce the winner of MS Prize.
The other important event will be opened for the public at Szabó Ervin Central Library (Bp., Szabó Ervin tér 1.) at 17-19:00 17/10/2013. Everybody else will get the prizes here and we organise a small celebration. Some games will be also organised there for children. We plan to establish skype connection with Slovakian, Polich and Czech friends.

More about the Camp

posted Sep 10, 2013, 8:06 AM by Bea Boncz

Here you can see a detailed description about our camp with many photos: https://sites.google.com/a/williams.org.hu/v4fcamp/our-mission/the-camp-2013

Our Camp is over

posted Jul 29, 2013, 2:12 AM by Bea Boncz

We managed to organise one of the biggest international camps for families with Williams Syndrome. Over 160 participants (54 families) could spend one week together at Balatonfüred (07/07-14/07/2013) and having fun and wonderful adventures. It was a great pleasure to collaborate with Slovakia, Poland and Czech Republic in this project and having guests from these countries. A detailed description is coming soon, but you can see many pictures and videos on our facebook profile.  


Our project

posted May 6, 2013, 5:48 AM by Bea Boncz   [ updated May 6, 2013, 5:50 AM ]

Dear Friends, you can see a short description about our project in 5 languages here.

Slideshow from Tatra Camp

posted Dec 14, 2012, 6:14 AM by Bea Boncz

In 2009. HWSA was invited by the Slovakian WS Association in the Tatra and we could spend 4 days togather in a wonderful environment and we managed to achive many adventure.

Tatra Camp 2009


Video about the Hungarian FEWS Camp in 2006

posted Dec 14, 2012, 5:35 AM by Bea Boncz

Here you can see our video about the Hungarian FEWS Camp in 2006. It was organised by HWSA and 13 country participated.

YouTube-videoklip


Follow us on Facebook!

posted Dec 13, 2012, 4:22 AM by Bea Boncz   [ updated Dec 13, 2012, 4:31 AM ]


Our facebook profile will be ready soon. Please follow us to share all of our achivements, memories, plans and photos. Be the member of our TEAM!

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