Aniridia is a very rare disease and every family affected is often alone to face the diagnosis. Aniridia Europe, the federation of European aniridia associations and representatives, has been founded to change this situation. Their goal is to collaborate in spreading proper and correct information on aniridia and the best available treatments, to support and inspire research by creating scientific interest on aniridia, to promote the development of national and international guidelines on aniridia and to encourage people affected by aniridia to create associations in other countries.
COST is a funding organisation for research and innovation networks. Our Actions help connect research initiatives across Europe and beyond and enable researchers and innovators to grow their ideas in any science and technology field by sharing them with their peers. COST Actions are bottom-up networks with a duration of four years that boost research, innovation and careers.
Orphanet is a unique resource, gathering and improving knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases. Orphanet aims to provide high-quality information on rare diseases, and ensure equal access to knowledge for all stakeholders. Orphanet also maintains the Orphanet rare disease nomenclature (ORPHAcode), essential in improving the visibility of rare diseases in health and research information systems. Orphanet was established in France and became a European endeavour from 2000, supported by grants from the European Commission: Orphanet has gradually grown to a Consortium of 40 countries, within Europe and across the globe.
The EU EYE is a non-profit pan European group aiming to build a respected forum which brings medicine, science, education and advocacy together and is accessible to all – citizens, decision makers, research and healthcare workforce. EU EYE advocates for people-centred eye health care with an on-going commitment to the integration of research priorities, policies and strategies in eye health at European level. The essence of our alliance is to advance interdependence and inspire collaborative work while recognizing members’ independence. EU EYE constituency comprises of ophthalmological societies and networks representing over 9,000 medical specialists active in clinical medicine, research, education and training in 100 countries.
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 962 rare disease patient organisations from 73 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.
European Reference Networks (ERNs) are unique and innovative cross-border cooperation platforms between specialists for the diagnosis and treatment of rare or low prevalence complex diseases. ERN-EYE, a European Reference Network dedicated to Rare Eye Diseases. ERN-EYE is constituted of 44 health care providers in 13 full members countries and 7 affiliated partners countries across European Union to guarantee the best coverage of more than 900 Rare Eye Diseases. The coordinator is Pr Hélène Dollfus, Hôpitaux Universitaires de Strasbourg, France.