Partnerships - Hellenic Friedreich's Ataxia Association

The Hellenic Friedreich’s Ataxia Association is part of the European family EUROATAXIA.

EUROATAXIA is an international non-profit association whose member organizations work together to help people with progressive disorders live a better life.

The European Consortium for Translational Studies (EFACTS) is a study originally funded by the European Commission and will gather vital information on the development of Friedreich’s disorder (FA) that can be passed on to patients to better inform them. their prognosis and the development of their condition. The goal is to create a large FA patient database, along with a comprehensive clinical and physical history database. This will be linked to a repository of biological samples. It also aims to define a set of clinical evaluation tools for use in future trials. There are two EUROATAXIA representatives on the steering committee for this project. It is currently supported by grants from Euro-ataxia member groups and pharmaceutical companies.

Euroataxia’s Objectives

To drive forward research and treatment of the ataxias.
To encourage the free flow of information between members on the latest research.
To foster and improve contacts between practitioners interested in the ataxias, and people with ataxia.
To investigate social, political and cultural matters connected to the welfare of people with ataxia, and promoting and improving the exchange of this information.
To promote co-operation on an international level between national ataxia organisations.
To raise awareness of ataxia among clinicians, scientists and society.

The Hellenic Association for Friedreich’s Ataxia works closely with FARA.

The Friedreich’s Ataxia Research Alliance (FARA) is a national, public, non-profit, tax-free organization, based in USA, dedicated to pursuing scientific research leading to therapies and a cure for Friedreich’s disorder. FARA’s mission is to pool and focus the resources and relationships needed to treat the FA, raising funds for research, raising public awareness and aligning scientists, patients, clinics, government agencies, pharmaceutical companies and other organizations. dedicated to the treatment of FA and related diseases.

The Hellenic Association for Friedreich’s Ataxia is an associate member of EURORDIS.

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 949 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.

The Hellenic Association for Friedreich’s Ataxia is an associate member of MDA HELLAS

MDA Hellas is a non-profit organization established in 2000 in Greece in order to assist holistically to the improvement of the quality of life of people with neuromuscular diseases.

The Hellenic Association for Friedreich’s Ataxia is an associate member of 95, Rare Alliance.

The Association “95”, Hellenic Alliance for Rare Patients is a primary non-profit association, which was founded in early 2019, with a vision to support Rare Patients in Greece.

The Hellenic Association for Friedreich’s Ataxia is an associate member of Hellenic Patients’ Association.

The Hellenic Patients’ Association is the confederation of over 45 patient associations from all over Greece and the whole range of therapeutic categories. It was founded in May 2019, with the aim of defending the rights of health care recipients, the equal participation of patients in the formulation and implementation of policies concerning them and their contribution to the promotion of public health. Since March 2020, the Union has been a member of the European Patients Forum, the European umbrella organization of national and regional patient confederations.