Hellenic Friedreich’s Ataxia Association

Hellenic Friedreich’s Ataxia Association
Analipseos 7, 54643

Phone: +302310869162, +306944383987 Email: info@hefaa.org

Website: https://hefaa.org/en/

Who are we
The Hellenic Association for Friedreich’s Ataxia was founded by both parents of patients and patients, suffering from this rare, neuroparalyzing disease.

Our goal is:
To help cure the disease and to ensure equal access of all patients to it.

We will achieve this by:

Showing and sensitizing audiences to the issues and difficulties of people suffering for Friedreich’s Ataxia at a national and international level.

Backing up the state’s institutions so they can implement all modern, scientific advances in the diagnosis, prevention, experimental treatments and cure of the disease.

Aiding and stimulating the timely import of effective treatments of Friedreich’s ataxia patients in Greece.

Our Vision
Our vision is one of a world free from the destructive disease of Friedreich’s Ataxia. Our actions aim to serve the needs of the people suffering from it.

We hope that we can turn this disease that has and continues to affect us all, into hope.

Our Values
The value of life is our ultimate guide in our constant efforts to change the natural course of this disease.

We believe in both the individual´s and the scientific research´s power. We value the people that choose to be with us and participate in our efforts.

As Friedreich’s Ataxia patients’ life expectancy is set on the second or third decade of life, every day counts towards our Association’s fight for our members’ well-being.

Hope strengthens our fight.

Euro-ataxia is an international non-profit association whose member organisations work together to help people with progressive ataxia lead their best life. We do this by building a strong organisation that represents people with progressive ataxia throughout Europe.

Our 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.

Our Constitution

Click here to view the Euro-ataxia Constitution.

Trustees of Euro-ataxia

President: Cathalijne Van Doorne (ADCA Vereniging Nederland)

Secretary general: Sue Millman (Ataxia UK)

Treasurer: William Davis (Ataxia Telangiectasia Society)

Board members:

Madeleine Schmeder (Association Française de l'Ataxie de Friedreich)

Juan Carlos Baiges (Fedaes)

Bart-Jan Schuman (Friedreich Ataxie Förderverein e.V.)

Andreas Nadke (Deutsche Heredo Ataxie Gesellschaft)

Euro-ataxia Information Leaflet

View our website information in the format of a printer-friendly leaflet.