ADOA – Autosomal Dominant Optic Atrophy Association

The Cure ADOA Foundation was established in 2018 by and for patients with autosomal dominant optic atrophy (ADOA) and its plus variant. In 2022, it became a recognized patient organization. The foundation is a non-profit entity with an official ANBI status and the CBF quality mark. It is headquartered in the Netherlands and is affiliated with the Association of Collaborating Parent and Patient Organizations (VSOP) and Eurordis. The foundation is supported by a medical advisory board that assists with medical content-related matters.

The Cure ADOA Foundation exists to support individuals affected by ADOA and ADOA-plus. Its mission is to financially enable scientific research into ADOA, aiming to facilitate treatment and potential cures. The foundation seeks to raise awareness of ADOA both nationally and internationally. It strives to be a trusted place for patients and their families, fostering interaction among patients, healthcare professionals, researchers, and the pharmaceutical industry.

The foundation supports individuals diagnosed with autosomal dominant optic atrophy (ADOA) and the ADOA-plus variant, which affects vision and can lead to additional symptoms such as hearing loss and muscle weakness.

The Cure ADOA Foundation engages in several key activities, including:

• Advocacy for increased awareness and research funding
• Educational initiatives to inform patients and healthcare providers
• Organizing support programs and events for patients and their families

The foundation provides various forms of assistance to patients and their families, such as:

• Information hotlines and consultations
• Educational materials and workshops
• Support groups and community events

The Cure ADOA Foundation has successfully established itself as a recognized patient organization and has been instrumental in raising awareness and funds for research into ADOA. It has also developed a community app to connect individuals affected by ADOA globally, facilitating communication and support.