FARA Ireland is closely associated with:
Ataxia Foundation Ireland (AFI). This patient organisation was founded in 2016 in Ireland by those who suffer with Ataxia. The charity provides advice and practical assistance for those with different types of ataxia and Hereditary Spastic Paraplegia.
Friedreich’s Ataxia Research Alliance (FARA) in the USA with whom we co-fund research projects was founded in 1998, two years after the discovery of the Friedreich’s Ataxia gene. FARA’s mission is to marshal and focus the resources and relationships needed to cure FA by raising funds for research, promoting public awareness, and aligning scientists, patients, clinicians, government agencies, pharmaceutical companies and other organizations dedicated to curing FA and related diseases.
FARA Ireland has become a member of the following organisation:
Rare Disease Ireland (RDI) which emcompasses all rare diseases
Irish Platform for Patient Organisations, Society, and Industry (IPPOSI) which is a patient led organiation that works with patients, governement, industry, science and academia to put the patient at the heart of health innovation. FARA Ireland member have attended their 2023 workshop on ‘Building a Data Sharing Enabled Health Sector in Ireland’
Euro Ataxia: FARA Ireland have applied to join this international non-profit association whose member organisations work together to help people with progressive ataxia lead their best life. FARA Ireland have been accepted verbally as a member and await formal ratification. FARA Ireland attended online their 2023 European Research Conference on Ataxia which was organised in cooperation with the Greeic Hellenic Friedreich’s Ataxia Association.
EURORDIS: The European Organisation for Rare Diseases is a non-governmental patient-driven alliance of patient organizations and individuals active in the field of rare diseases, that promotes research on rare diseases and commercial development of orphan drugs. FARA Ireland’s secretary, Dr Mary Kearney has partaken in their open academy summer school on Medicines Research & Development.