niedziela, 16 grudnia 2018 roku


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Newsletter Natalii zapraszamy

Jeżeli chcesz otrzymywać bieżące informacje o tym co nowego u Natalii, podaj swój adres email.
Welcome to our Website. PDF Drukuj Email

We are happy to welcome you on our website!

It has been created following the diagnostic with Prader-Willi-Syndrome (PWS), a rare genetic disorder, of our Daughter Natalia, when she was 5 months old. We wanted to create a source of useful information for people suffering from this disorder, for those who had or have contact with PWS, as well as everyone who wants to learn more about this disease.

On the website you can also find out how to help Natalia in her struggling against PWS disease (see tab: “how to help”) which is for now a life-lasting disorder (unless some medicines will be discovered).

We also made this website to thank all the people, who contribute to a better life of our daughter. In order to thank you for your support, we keep track of her development and achievements in the tab “Month after month”, so that you can see what we’ve managed!

Further, we would like to share with you information about both upcoming and previous events in the Polish and German PWS-Associations.

We will do our best to translate the main contents of the website into English; unfortunately, we cannot translate all the information in English since our resources are limited. We’ve just started and it will take us some time, but we plan on translating most of the website until the end of 2011. New articles and news will be published both in Polish and English!

If you would be interested to be informed as soon as we’re done with the translation part, just leave us your email address and we will let you know. For this purpose, please feel free to use contact formular). In case you are wondering, we can communicate in German, Spanish and French. Just contact us :).

Natalia’s Parents