CURE ADOA FOUNDATION
Brings patients together and is committed to research
ADOA is a very rare hereditary eye disorder that causes visual impairment and sometimes even blindness.
The plus syndrome is a variant in which more complaints arise.
There is no treatment or cure yet.
Cure ADOA Foundation
The Cure ADOA Foundation was founded by and for patients with ADOA and ADOA-plus. As a recognized non-profit patient organization, we fund scientific research into treatment and a cure. We also raise awareness of ADOA both domestically and internationally. The foundation holds ANBI status and the CBF quality mark, and is medically supported by a medical advisory board.
CURE ADOA FOUNDATION
Our Goals
Awareness
Patients
Serving as a trusted resource for patients and their loved ones
Interaction
Research
Raising money for scientific research
What is ADOA?
ADOA is a very rare hereditary eye disorder in which there is an energy deficiency in the optic nerve cells, causing them to break down. This is due to a mutation in the OPA1 gene. ADOA causes visual impairment and sometimes even blindness.
Living with ADOA
Living with ADOA can raise many questions. Will I be able to drive? What tools and supports are available? What are the chances that my children will have ADOA? We try to answer as many questions as possible.
ADOA-plus syndrome
Autosomal dominant optic atrophy-plus syndrome (ADOA-plus) is a variant of autosomal dominant optic atrophy and accounts for 20% of all ADOA cases. People with ADOA-plus also experience loss of function in other areas.
Patient Day
We organize a patient day a few times a year. A speaker is invited to provide more information about ADOA and/or ADOA-plus. Through interactions with peers, ADOA patients can feel heard and supported.
The road to treatment
Research
Stimulating research into ADOA is a key goal of the Cure ADOA Foundation. Without research, there is no knowledge, without knowledge, no treatment, and without treatment, no cure. That's why we support scientific initiatives and regularly share updates in our "The Road to Treatment" section. This way, we keep everyone informed of the latest developments and steps toward a future treatment for ADOA.
Latest updates
#37: A promising step towards treatment: PYC-001 at ADOA
The search for an effective treatment for ADOA has reached an important milestone…
#36: Mitochondrial targeting and engineering
We recently spoke with Professor Botond Roska, Director of the Institute of…
Patients
As soon as someone learns that they have ADOA(-plus), many emotions are often unleashed and many questions arise. With our website, we strive to be a trusted place for ADOA(-plus) patients and their loved ones.
This site features stories from fellow patients. We have also written answers to various questions from patients. We organize several peer support days annually, where we can meet and share experiences.
Stories and interviews
We regularly post in our "Stories and Interviews" section. Would you also like to share your story? Let us know!
Also listen to our Podcast!
Children and ADOA
ADOA(-plus) is hereditary. Children, too, can be confronted with this condition at an early age. There is a dedicated children's page. Read all about ADOA(-plus), its origins, and how you got it. In addition, we offer useful information and materials for preparing a presentation or research project about ADOA(-plus).
The Cure ADOA Foundation App
The Cure ADOA Foundation app is a community app for everyone connected to ADOA(-plus). With this app, you always stay up to date on the latest news regarding ADOA and our foundation. It is a GDPR-compliant platform where you can chat with each other in group chats as well as one-on-one.
Nearly 100 people have already signed up. You can sign up for the app by entering your name, email address, and preferred language. to email to Marieke. More information can also be requested via this e-mail address.
Ambassador Nina Warink
As an ambassador for the Cure ADOA Foundation, Nina Warink is committed to raising awareness of ADOA. In her personal documentary *Wazig*, she shows what the condition means to her and her family. By doing so, she brings ADOA closer to people and helps us make research into a treatment possible.
Read more about Nina at this page
Ryan Searle ambassador
Ryan Searle is also an ambassador for our foundation. Ryan is a professional darts player and, despite his ADOA diagnosis, is in the top 20 of the PDC Order of Merit. During the 2026 PDC World Darts Championship, he drew attention to ADOA(-plus), particularly because it affects not only himself but also his children.
