Dear All,
The VSOP (Patient umbrella organization for rare and genetic disorders) has asked us, as the board of the Cure ADOA Foundation, to give an opinion from the patient perspective on behalf of the supporters about your experiences with the treatment, guidance and research for ADOA and ADOA-plus in Radboudumc in Nijmegen.
In the Netherlands, Radboudumc Nijmegen is the center of expertise for mitochondrial diseases: the Radboud Center for Mitochondrial Medicine (RCMM). There, a team of doctors and other healthcare providers has extensive knowledge of mitochondrial diseases. We need your help to provide the assessment.
We have created a single questionnaire in which you can indicate whether you are completing the questionnaire for the Ophthalmology department (ADOA and ADOA-plus) or for the other departments (ADOA-plus). If you have experience with both, you may also complete multiple surveys. This is possible as a patient and/or as parents or relatives of a patient.
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 receive the treatment and guidance that may be expected from an expertise center, we ask you to fill out 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 of age), or is unable to complete the questionnaire themselves, we ask the parents or next of kin to do so.
We look forward to receiving your questionnaire. no later than Sunday, June 28, 2026.
Thank you in advance for your time!
Yours faithfully,
The board of Cure ADOA Foundation
