CURE ADOA FOUNDATION
The foundation
Mission
The Cure ADOA Foundation was founded in 2018, for and by ADOA(-plus) patients. Our mission is to be a platform to make scientific research financially possible, so that the treatment and cure of ADOA(-plus) is stimulated. To achieve this, we want to promote brand awareness nationally and internationally. Collaboration is crucial. We seek interaction with doctors, researchers, the pharmaceutical industry and patient organizations abroad.
With our foundation we also want to be a trusted place in the Netherlands to which every individual and every family affected by ADOA(-plus) can connect. A place where we can share knowledge, experiences, tips and support together. There will be at least one fellow-sufferer's day every year, where sharing experiences and obtaining information will be central.
Goals
- Raising money for scientific research to promote the treatment and cure of ADOA;
- Publicizing ADOA, nationally and internationally;
- Promote interaction between ADOA patients, physicians, researchers, the pharmaceutical industry, and international patient organizations.
- To be a trusted place for ADOA patients and their loved ones.
Due to the rare nature of the condition, we in the Netherlands are a small but active place for people with ADOA. Dominant optic atrophy affects many lives; not only the life of the patient, but also that of his loved ones. Through our efforts, we hope to bring attention to ADOA and raise awareness about the debilitating nature of this disease.
Medical Advisory Board
As Cure ADOA Foundation we have a medical advisory board:
DRS. JAM FROM EVERDINGEN
EYE HOSPITAL ROTTERDAM
Ophthalmologist, general ophthalmology and neuro-ophthalmology
DR. IFM THE COO
UNIVERSITY OF MAASTRICHT
Pediatric neurologist, Coordinator NeMo Center of Expertise
PROF. DR. CJ BOON
AMSTERDAM UMC
Ophthalmologist, professor of ophthalmology and hereditary eye diseases
The board
From left to right:
Lotte de Jonge (member). Maud van Gerwen (member), Hedy Smit – Wigchers (treasurer), Gabriëlle den Hollander – Beijer (secretary) and Wouter Jongerius (chairman).
Ambassador: Nina Warink
CBF Recognition
The Recognition is the quality mark for charities that is issued by the Supervisory Authority CBF. With the Recognition, organizations show that they meet strict quality requirements. Of course, different requirements apply to larger organizations than to smaller ones. No less than 4,4 billion euros in donations are supervised by the CBF.
You can safely donate to a Recognized Charity to donate, because you can assume that the organization actually contributes to a better world, handles every euro with care, is accountable and allows itself to be independently audited.
Donate to the Cure ADOA Foundation >
Transparency at a glance: the CBF Recognition Passport
The CBF Recognition Passport shows the most important information of a Recognized Charity in a clear and neutral way. Transparency at a glance. The passport contains both qualitative information about the objective and activities of the organization and financial key figures. The latter have been validated by the Supervisory Authority CBF.
ANBI status
As a foundation, we have the official ANBI status and are therefore a charity that can be donated with tax benefits. All donations are 100% reserved for funding research.
The costs are largely paid from the PGO subsidy. Activities are also financed by contributions from funds or by sponsorship in cash or in kind. The board members and the medical advisory board receive no remuneration.
Donor interests
We are proud that we have the Donors' Interests Badge allowed to wear. Donors Interest Foundation ensures that we collect donations in an honest and respectful manner, and that we are transparent in our accountability to our donors. With this badge we show that we work 100% donor-oriented in every phase!
Annual reports and other documents
Below you will find all relevant documents regarding the obligations associated with CBF Recognition, ANBI status and Donor Interests Badge:
Cure ADOA Foundation policy plan 2024-2025
Cure ADOA Foundation policy plan 2018-2023
Code of Conduct Cure ADOA Foundation
Internal complaints procedure Cure ADOA Foundation
Tax Authorities Standard Form ANBI 2025
Tax Authorities Standard Form ANBI 2024
Overview of secondary functions of board members
Articles of Association of the Cure ADOA Foundation
VSOP
As the Cure ADOA Foundation, we are a member of the VSOP (Association of Collaborating Parent and Patient Organizations). The VSOP is a partnership of approximately 60 patient organizations, often for conditions with a hereditary or congenital component. The VSOP focuses in general on genetic and biomedical research and policy, and in particular on the specific problems of rare disorders.
We can also be found via the website View of Zeldzaam. The Cure ADOA Foundation is listed as patient organization and ADOA is listed as rare condition.
EURORDIS
The CURE ADOA Foundation is also a member of EURORDIS. This is a non-governmental alliance of patient organisations for people with a rare disease. There are more than a thousand organisations members. In this way, EURORDIS works on a strong community of patient organisations and people living with rare diseases.
Themes that the alliance focuses on include: diagnoses, research, treatments and much more. Information is exchanged among each other, but the alliance also works to bring rare diseases to the attention of the European Parliament. EURORDIS is also the organizer of the worldwide 'Rare Disease Day'.
