PWS Hungary

Thank you for your support and sharing:

pwshungary-logo-ipwso

Our Hungarian website: http://www.pwshungary.com

This is our Hungarian (central European) website where we publish important basic information and news about Prader-Willi Syndrome events, stories. Years ago in Hungary when our son Stony was born the community and the knowledge and awareness of the physicians about Prader-Willi Syndrome was very few.
We had to make our own research day by day about the condition of our son, and when he was one year old we have already strongly suspected that he has Prader Willi Syndrome. We had to diagnose him ourselves as the physicians were unable to recognize the underlaying cause.

Luckily through our research we have contacted and got lot’s of help form other countries, from  parents, communities, associations and physicians and the International Prader Willi Organisation (IPWSO)  has helped us tremendously !
Slowly we were able to realize see and that there is no support no awareness and no future in Hungary for those with Prader Willi Syndrome. It was very tough. We have immediately understood the huge need of forming a community in Hungary so we have started to get in action!
We have started to gather the parents throughout of the country, started to search for all the chances where and how we can educate the physicians and spread the awareness about this rare disease. We have started to translate booklets, important medical information what we got from IPWSO  and started to work on establish the Hungarian Prader Willi Association.

We were shocked when we realized how strong and massive the wall what we need to destroy in our country. No awareness, no help, no support, no future, no medication. Needed and needs a huge massive change and we were eager to make it happen.

And there were some really great moments as well. 🙂 We became the Hungarian parent delegates for IPWSO (ipwso.org) and they were visiting us in our home in 2010. It was a great moment for all of us and gave more hope for the future.
We have also met with the Founder of the Romanian PWS Association. They have made a very great and very hard work in Romania and have had awesome results. It was a great and very positive experience for us again. 🙂
So we were happily sharing these uplifting moments with the Hungarian PWS parents to give them hope and show them there is HELP out there! we just have to reach out for it!

In one year we have taken a big decision and moved to England and left Hungary in 2011. We have left family and friends and all our memories to start a better future in another country. Later in 2015 we have moved to USA.
But despite being far we are still committed to work on the PWS awareness in Hungary and to the help of the families with PWS. We have maintained a small Hungarian PWS community and we help them wherever we can. We try to provide them all the needed information.
We are constantly working on spreading the awareness in Hungary and give hope to the parents.

 

 

pwshungary-logo-1

Our Hungarian website: http://www.pwshungary.com