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.
The Cure ADOA Foundation was founded in 2018 by and for patients with autosomal dominant optic atrophy (ADOA) and the plus variant.
In 2022, we became a recognized patient organization. We are also a non-profit organization with an official ANBI status and the CBF quality mark and we are affiliated with the Association of Collaborating Parent and Patient Organizations (VSOP) and Eurordis.
In addition to the general board, the foundation also has a medical advisory board that supports us in medical matters.
Our mission is to financially support scientific research in order to promote the treatment and cure of ADOA. To achieve this, we want to increase awareness of ADOA nationally and internationally.
The Cure ADOA Foundation has four main goals.
Serving as a trusted resource for patients and their loved ones
Raising money for scientific research
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 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.
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.
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.
Enabling research into ADOA is an important goal of the Cure ADOA Foundation because without research there is no knowledge, without knowledge there is no treatment and without treatment there is no cure.
We regularly post in our section 'The Road to Treatment' to keep everyone informed of developments around ADOA.
The news that you or a loved one has ADOA(-plus) can elicit many emotions and questions.
We hope to provide a trusted resource for ADOA(-plus) patients and their loved ones.
This site contains stories from fellow ADOA(-plus) patients. We also provide answers to various patient questions.
We organize several patient days every year where patients can meet and share experiences.
A separate page is available for children.
We regularly post in our "Stories and Interviews" section. Would you also like to share your story? Let us know!
ADOA(-plus) is hereditary. Children can also face this condition at an early age.
Visit our children's page to read all about ADOA(-plus), its origins, and how children can get it.
The Cure ADOA Foundation app is a community app for everyone who has a connection with ADOA(-plus).
With this app you will always be informed of the latest news about ADOA and our foundation.
It is a GDPR-proof platform where people can talk to each other in group chats, but also 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.
Nina is a content creator and has more than 600.000 followers on Instagram alone. She also writes cookbooks, has her own kitchen textile line called NINÉ Kitchenware and creates the podcasts VrouMiBo and Kibbeling.
Nina herself does not have ADOA, but she does have several family members with this disease.
Nina is committed to raising money for research and raising awareness about ADOA.
“On Wednesday, September 28, the time had come: my documentary 'Wazig – Living with ADOA' was released! I was so looking forward to sharing this special and especially personal project with you. ADOA is central in the documentary and my father plays a major role.”
Nina Warink is the ambassador of the Cure ADOA Foundation. She works to build awareness of ADOA and raise funds in order to fulfill the mission of the Foundation: to enable research into the treatment of ADOA!
You can read more about her actions for the Cure ADOA Foundation this page.
If you want more information about ADOA and ADOA-plus, we recommend watching the informational film below.
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