The Cure ADOA Foundation was founded in 2018. For and by ADOA patients. Our mission is to be a platform to make scientific research into ADOA financially possible, so that finding the treatment and cure of ADOA is stimulated. To achieve this, we want to promote the awareness of ADOA internationally. Collaboration with all parties concerned is crucial. We seek interaction with doctors, researchers, the pharmaceutical industry and patient organisations abroad. With our foundation we also want to be a safe and trustworthy place in the Netherlands and abroad to which every individual and family affected by ADOA can inform themselves. A place where ADOA patients can share knowledge, experiences, tips and support. An annual contact day will take place in which the sharing of experiences and obtaining information will be central.
- Raise money for scientific research to stimulate treatment and cure of ADOA;
- Raise awareness of ADOA, nationally and internationally;
- Promote interaction between ADOA patients, physicians, researchers, pharmaceutical industry and international patient organizations. Also have a medical team draw up a plan for research;
- To be a safe and trustworthy place for ADOA patients and their families.
Because of the rare nature of the condition, in the Netherlands we are with a small but very active patient population. ADOA affects many lives; not only the life of the patient, but also that of their relatives. Through our efforts we hope to draw attention to ADOA and raise awareness about the debilitating nature of this disease.
Medical Advisory Board
As the Cure ADOA Foundation, we have a medical advisory board:
Drs. J.A.M. van Everdingen, Rotterdam Eye Hospital
Dr. I.F.M. de Coo, Maastricht University
Prof. Dr. C.J. Boon, Leiden Unicersity Medical Centre
We are happy to answer your questions and keep everyone with ADOA informed of recent medical and other developments through this website and our newsletter.
The board of the foundation consists of the following persons:
Sander Dikhoff (chairman)
Gabriëlle den Hollander – Beijer (secretary)
Hedy Smit – Wigchers (treasurer)
Lotte de Jonge (member)
Kim Warink (member)
Maud van Gerwen (member)
As the Cure ADOA Foundation, we are a member of the VSOP (Association of Collaborating Parent and Patient Organizations). The VSOP is a collaboration of about 60 patient organizations, mostly for disorders with a hereditary or congenital component. The VSOP focuses in a general sense on genetic and biomedical research and policy, and in particular on the specific problems of rare diseases.