We are glad to share with you that as a part of its activities, ERN BOND is launching one questionnaire addressed to healthcare professionals & patient groups and one dedicated to patients with the aim to take stock of the registries or databases being used in Europe and to identify the main challenges faced by stakeholders with data entry into a natural history database.

For more information about the questionnaire, for a help in answering to it or other information, patients can contact healthcare professional in their own country.

You can find a list of HCPs speaking your language clicking here  or write to ERN BOND general coordination at info@ernbond.eu or through our contact form (click here). The questionnaires have been translated into the following languages: German, Italian,French, Portuguese, Swedish, Czech, Estonian and Flemish/Dutch.

The deadline to complete the questionnaires is the 19th August.