This survey is also available in: BG - DE - DK - DU - ES - FR - GR - HR - HU - IS - IT - MK - PL - PT - RO - RS - RU and SK.

We would appreciate if you could take a few minutes to complete this anonymous questionnaire. Concise, short and accurate answers are preferred. Please take your time. The collected data will be processed by trained staff in order to point out (via the reports which will be available), the existing problems to the National Health Authorities and engage in a dialogue with them. We do not have the resources to respond to individual cases. We will not communicate the results directly to you, but you will be able to read the outcomes of this campaign on the EURORDIS website (a specific “Access Campaign” page will be created). Thank you for your time.

Founded in 1997, the European Organisation for Rare Diseases (EURORDIS) is a non-governmental patient-driven alliance of organisations and individuals active in the field of rare diseases in Europe. EURORDIS represents over 600 rare disease patient organizations in more than 50 countries, covering more than 4000 rare diseases. For more information:

* 1. Question 1 : Please indicate for which type of care you wish to report difficulties about ?

* 2. Question 2 : What is the name of the treatment/type of care you have difficulties accessing?

* 3. Question 3 : What is the name of the disease, condition or indication ?

* 4. Question 4 : In which country do you live ?

* 5. Question 5 : Which type of issues are causing you difficulties ? (Several responses possible)

* 6. Question 6 : Can you explain in more detail what your problem(s) have been about access and getting the treatment ? What impact this has had on your health ? (maximum : 300 words)

* 7. Question 7 : How long have you been on this type of care?

* 8. Question 8 : In your personal experience, in the last 2-3 years, has the level of difficulty in obtaining your care…

* 9. Question 9 : Is there any other information that you would like to report to us?

* 10. If you agree to be contacted again (in case we need more information), please give us your e-mail address :

If you provide us with your e-mail address, it will be used only to contact you again in case we need further information. Your address will be communicated only to the EURORDIS staff person who works on this campaign and it will not be kept in our files for more than two months. In accordance with the Data Protection Commissioner and the Office of the Information Commissioner Executive Department data privacy legislation, you can access, modify, or suppress your information at any time. If you want to exercise this right and obtain information about your data, please contact

Thank you for your time!