A drug critical to the treatment of the rare disease Friedrich’s Ataxia, the Hellenic Association and patients have been waiting for many years. The Minister of Health, Adonis Georgiadis approved the first introduction of an innovative medicine in Greece for adults and children over 16 years of age.

“Today is a happy day, a day that our patients with the rare disease Friedrich’s Ataxia, their families and carers, have been waiting for years. Many of them did not make it to this moment and today they are mentally celebrating with us. Others, perhaps most, waited patiently and patiently, either confined to their wheelchairs, or making a superhuman effort to use their minimal strength and live their daily lives.

Today we celebrate the first major introduction in Greece of an innovative drug for our condition, Skyclarys® by Biogen Inc. It is the first treatment approved in the European Union by the Commission and the European Medicines Agency in early February 2024 for administration to adults and adolescents aged 16 years and older, suffering from this rare, genetic, progressive neurodegenerative disease.

This medicine will help our patients, most of whom are children, to improve their daily lives, delay the progression of the disease and in many cases reverse the severe signs of their disease. Most importantly it will give them hope.

This is a great success, as Greece is currently at the forefront of European countries. This would not have been possible without the immediate, timely and tireless efforts of the Minister of Health, Mr. Adonis Georgiadis and IFET. In my capacity as President of the Board of Directors of the Hellenic Association for Friedrich Ataxia, I would like to thank the Minister and the IFET from the bottom of my heart for this support.

In the exercise of politics, two things matter: the consistency of words and actions and effectiveness. Especially in rare disease policies, this translates into medicines and care for our patients.

On January 22, 2024, we met with the Minister of Health, Mr. Georgiadis, and presented the problem to him, asking for his support. Today June 13, 2024, and within six months, the miracle happened and our patients will begin their treatment. Today the Minister proved that he has all these characteristics and we thank him for that on behalf of our patients and especially our children.

As an Association we continue our fight, not only for our patients’ access to innovative treatments, but also for actions and collaborations that promote and promote scientific research in rare neurological diseases. We continue strong with a vision and having by our side people who are fighting for the most precious good, their health and dignity”.