Establishment

The Hellenic Association for Friedreich’s Ataxia is a non-profit organization founded in 2020, in the city of Thessaloniki by both parents of patients and patients suffering from this rare, neuroparalyzing disease. It is the first association for this rare neurodegenerative disease in Greece.

Our Association gives a voice to all those suffering from Friedreich’s Ataxia and is a single legal entity, representing their collective will.

The association is run by the five-member Board of Directors, according to all the provisions of the Articles of Association and those of the Greek Civil Code.
The estimated number of FA patients in Greece is one hundred (100) with this
association representing every one of them.

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

We will achieve this by:

  1. Showing and sensitizing audiences to the issues and difficulties of people
    suffering from Friedreich’s Ataxia at a national and international level.
  2. Assisting the state’s institutions in the implementation of current scientific methods in the diagnosis, prevention, experimental treatments and treating the symptoms of the disease.
  3. Aiding and stimulating the timely import of effective treatments for
    Friedreich’s Ataxia patients in Greece.

The statute of our association was approved by decision no. 55Σ/2020 of the Single Member Court of First Instance of Thessaloniki and was registered in the Book of Associations of the Court of First Instance of Thessaloniki with number 10661 / 21-05-2020.

You can read in detail the entire statute of our association (in greek) here:

Association's logo

The association’s logo is a colorful DNA strand that highlights the genetic nature of the disease and at the same time, the bright colors reveal the hope for a gene cure.
In the center of this difficult struggle is the family united, hand in hand and the doctor standing tirelessly next to her…
Together we will defeat this disease!

Association's Members

According to the association’s articles of association:

1. The patients of Friedreich Ataxia as well as their relatives by blood and by marriage can become members of the Association in a straight and lateral line up to the fourth degree.
2. The members of the Association must have the capacity to act legally.
3. The above persons are registered as members of the Association after their application approved by the Board at its first meeting after the submission of the application.
4. If the Board rejects the application or within one month from its submission does not notify its decision to accept or reject the application to the applicant, he has the right to appeal to the competent Magistrates’ Court and request its registration in accordance with legislation. The application submitted by the candidate member must state his / her details and declare responsibly that he / she suffers from Friedrich Ataxia or that he / she is bloodied or married in a straight line or up to the fourth degree of a person suffering from Friedrich Ataxia.
5. Probationary members of the Association can be registered patients suffering from Friedrich Ataxia, who have completed the fourteenth (14th) year of age and have not reached adulthood. This registration is done with the consent of their parents or those who have their parental responsibility or the end of the custodial parent. Trial members pay το the registration fee and subscriptions. They have the right to attend the General Meetings, but they are deprived of the right to vote. The probationary members are registered in a separate register and upon reaching the age of 18 they automatically become regular.
6. The promotion of honorary members is proposed by the Board of Directors of the Association or by at least one fifth (1/5) of the regular members and is decided by the General Assembly. Honorary members can be those individuals who have offered distinguished services in finding a cure or cure for Friedrich Ataxia, or who have shown great work in finding a cure or cure.
7. The BoD can also declare as auxiliary members, natural or legal persons, who experience the problems caused by the disease and are engaged (friendly or professionally) in dealing with them and want to help the Association and wish to contribute in any way to the achievement of its goals. . Auxiliary members regularly pay a financial contribution for the purposes of the Association.
8. Honorary and auxiliary members do not exercise administration and are registered in separate registers of members. Honorary and auxiliary members are not entitled to vote or to be elected from among the elected members of the Association. They may attend the meetings of the General Assembly and express their views and opinions without a vote.
9. The BoD by its decision, it is entitled to hire a paid or unpaid five-member Scientific Committee, as well as its alternate members, in order to better achieve its goals. The scientific committee of the Association is responsible for the suggestion and explanation of the scientific and educational work of the Association and the recruitment of specialized support staff. Indicatively, the scientific committee may consist of a neurologist, geneticist, pediatric neurologist, cardiologist, physiatrist, ophthalmologist, pharmacist, etc.

Our association, in order to better achieve its goals, actively cooperates with other patient associations and institutions in the country, but also organizations and institutions at European and international level.
All the members of our association offer unceasingly, voluntarily, personal time, in order to respond to the difficult task and to achieve the goals of the association.

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