Are you facing difficulties accessing care for your rare disease?

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.

Please take 10 minutes to share any difficulties you have experienced in accessing care for your rare disease, for example, medicine, surgeries or consultations.

This survey is part of the EURORDIS Access Campaign and will help EURORDIS-Rare Diseases Europe, a non-profit alliance of 1000+ patient organisations, to highlight existing problems in accessing care for rare diseases on a national and European level.

Where possible, responses will be shared with a rare disease helpline in your country which is part of the European Network of Rare Disease Helplines (ENRDHL) to analyse and offer you direct support in accessing care. (https://www.eurordis.org/information-support/rare-disease-help-lines/)

For more information, please visit: www.eurordis.org

Your answers will only be accessible to the research team and the rare disease helpline in your country. We will not communicate the results directly to you, but a report will be available on the EURORDIS website.

In accordance with the Data Protection laws, 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 access@eurordis.org.

If you have any questions, please contact: access@eurordis.org

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

Surgery

Medicines, medical devices or equipment

Consultation with a general practitioner

Visit to a specialist

Hospitalisation

Social care/services

Planned hospital admission

Cross-border care

Rehabilitation

Other

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

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* 3. What is the name of the disease or condition ?

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* 4. In which country do you live ?

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

I could not afford it (too expensive treatment and care is not well reimbursed)

I could not afford to pay in advance and wait for reimbursement

I have to wait too long for access the care

I don’t have any time because of work, care for children or for other reasons

I need to go too far away or I have no means of transportation

I’m afraid to go to the doctor/hospitals / examination or afraid of this type of care

I wanted to wait and see if the problem(s) got better on its own

I didn't know any doctor or specialist with expertise in my disease/condition

I'm afraid to ask for a second medical opinion or another doctor

Other

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

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* 7. How long have you been receiving care for this disease?

Less than 6 months

Between 6 months and 1 year

Between 1 year and 2 years

More than 2 years

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

Gotten a lot worse

Gotten worse

Stayed about the same

Gotten better

Gotten a lot better

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

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* 10. Do you agree to be contacted again if we need more information or can offer you support in trying to access care? If yes, please share your email 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 or for the helplines to offer you support in trying to access care. By filling this field, you consent for your email address to be shared with the rare disease helpline in your country and kept on EURORDIS files for no more than six months.

Individual stories will not be used without additional permission and discussion with you. Any publication will be anonymous.

Thank you for participating in this questionnaire and for sharing your experience. We truly value your time and commitment!