INFORMATION ABOUT PATIENTS WITH SPINAL MUSCULAR ATROPHY (SMA)
It is with great pleasure that we announce the arrival of Panagiotis – Rafael Glossiotis and his family to Greece, after the successful administration of the drug Zolgensma and the completion of the monitoring protocol, on Sunday, March 22, 2020. Panagiotis is in good health which is already improving. According to his doctors, the exact results of the drug will be known in about 2 years.
We cannot thank you enough to express our gratitude to all the donors who changed the life of our Member, Panagiotis-Raphael, offering him the opportunity for a valuable treatment.
We would also like to thank the Ministry of Health and especially the International Relations Department, as well as the Civil Aviation Authority – Directorate General of Air Transport that contributed to the family’s safe return.
Within our constitutional purpose to improving the quality of life of people with Neuromuscular Diseases and taking into consideration the recent scientific developments, we are in direct cooperation with the Ministry of Health and the National Organization of Medicines, in order to provide for the rest for the patients who have recently been diagnosed with SMA and meet the necessary criteria, the gene therapy Zolgensma, in Greece.
Taking in to account that there is no marketing authorization from EMA, but each patient needs to take the drug in a specific period we are moving towards into two directions:
A. Participation of our patients in the Global Managed-Access Program (MAP*). Through this program 100 pro bono doses of the drug by Avexis will be given to patients from countries that has not yet been authorized. But the administration of the drug through this program is not certain since it will be randomized.
B. There is also an effort of negotiation between the company and the government in order to emergently import it in our country for all the patients who will not be chosen by MAP.
For further information: