The issue of direct import into Greece, of the first drug to treat Ataxia of Friedrich pth reaches the stage of recommendation for approval by the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) was discussed during the committee meeting of the Hellenic Society for Friedrich’s Ataxia with the Minister of Health Adonis Georgiadis.

The Hellenic Association for Friedrich’s Disorder, which is based in Thessaloniki, has prioritized the immediate introduction of the drug into Greece and the timely access of Greek patients over the age of 16 to treatment as well as the initiation of a pediatric study at a university hospital in the country.

At the meeting, the issues of the introduction of the drug, the need for close cooperation with the competent bodies to immediately include the drug in the positive list, the framework for supporting patient access and the acceleration of the creation of a Patient Registry (with Friedrich’s Ataxia), were discussed in detail at the meeting. the realization of a pediatric study and the cooperation framework of the Association with the Ministry of Health in this direction. The positions and requests of patients and caregivers were presented, while at the same time the Minister of Health was informed about:

  • The disease of Friedrich’s Ataxia, the prevalence in our country and the effects on the life and everyday life of patients and caregivers.
  • The purposes and action of the Hellenic Society for Friedrich’s Ataxia in supporting Friedrich’s Ataxia patients as well as its contribution to improving the lives of all patients with rare diseases through the Rare Diseases Association of Greece
  • The issues of patients’ daily life
  • Supporting research in collaboration with Universities and research centers in the direction of finding a cure.

What is Friedrich’s Ataxia

Friedrich’s Ataxia is a rare, inherited, neurodegenerative disease caused by a defective frataxin gene and is characterized by ataxia (lack of order and coordination), muscle atrophy mainly of the lower limbs, instability, scoliosis, dysarthria, fatigue , diabetes, vision and hearing loss as well as life-threatening heart disease.

The disease is progressively worsening. Within ten years of the onset of the disease, the patient loses the ability to move independently, needs support and mobility with a wheelchair, becomes progressively paralyzed, his nervous system collapses, loses the ability to see and speak. Friedrich’s Ataxia affects about 1 in 50,000 people and appears during childhood or adolescence with a life expectancy of 25-30 years.

In Greece, it is estimated that the registered patients amount to 100 people.