Dear fellow sufferers,
The VSOP (Patients' Association for Rare and Genetic Conditions) has asked the board of Cure ADOA Foundation to provide an opinion from a patient perspective on behalf of its supporters about your experiences with the treatment, guidance and research for ADOA and/or ADOA plus in the following three expertise centers . If you click on the links, you will be taken to the survey of the relevant expertise center.
- Radboudumc Expertise Center for Hereditary Metabolic Diseases
- Maastricht UMC+ Expertise Center for Mitochondrial Diseases
- Amsterdam UMC Expertise Center for Neurophthalmology
An expertise center is part of a hospital. A hospital is a center of expertise for a specific condition if:
- there are specialists present with knowledge of the condition;
- there is knowledge about the condition;
- scientific research is being conducted into the condition.
To get a good idea of whether you are receiving the treatment and guidance that can be expected from an expertise center, we ask you to complete this questionnaire. This questionnaire asks about your experiences with this treatment and guidance in the above hospital.
We collect the information from the patient perspective. If the patient is a child (under 16 years old) or is unable to complete the questionnaire themselves, we ask the parents or relatives to complete the questionnaire on their behalf.
We ask you to complete the following questionnaire digitally no later than June 13.
Thank you very much in advance for your time!
Yours faithfully,
The board of Cure ADOA Foundation
