Dear ESPKU Member Organisations
I hope you are all well, and , on behalf of the ESPKU Board , thank you all, for your tremendous support for Ukrainian PKU patients.
The ESPKU has embarked on a project to assess the differences between care recommended in the European Guidelines on the treatment for PKU- and the reality in care delivered in European Countries.
We wish to identify gaps between the two if they exist. The findings will be analysed, peer reviewed and published in a reputable scientific publication.
We have developed a questionnaire for all PKU patients/carers to complete. The more responses we receive from your country, the more weight will be given to our analysis.
We ask you to promote this survey to all your members and reach out to non- members in your country. You can do this via your own networks , but also via Rare Disease organisations who you may work with for example on Rare Disease Day planning (note:-do let them know this a PKU specific questionnaire).
To facilitate this, the survey will be in the six most commonly spoken European languages- Russian ; German; French; English; Turkish & Spanish.
English version: https://dotazniky.valueoutcomes.cz/dotazniky/espku_en
German version: https://dotazniky.valueoutcomes.cz/dotazniky/espku_de
Italian version: https://dotazniky.valueoutcomes.cz/dotazniky/espku_it
Spanish version: https://dotazniky.valueoutcomes.cz/dotazniky/espku_es
French version: https://dotazniky.valueoutcomes.cz/dotazniky/espku_fr
Russian version: https://dotazniky.valueoutcomes.cz/dotazniky/espku_ru
Turkish version: https://dotazniky.valueoutcomes.cz/dotazniky/espku_tr
We hope you will all participate in this and make your voice heard.
It is likely to be one of the biggest surveys of PKU patients ever conducted.