5th seminar on patients' rights with rare diseases

On the topic "Fighting for the Rights and Health of Patients with Rare Diseases", the Fifth Rare Disease Training Seminar was organized by the Panhellenic Association of Rare Diseases (PESP) and was held at the Divani Caravel Hotel, on Friday 29 September.

The 5th Seminar is the continuation of a series of PESPA seminars aimed at informing both patients and health professionals about Rare Diseases. The special success of the event lies in the fact that it covered the great need of patients and their families for information on their rights. This meeting was attended by a large number of patients and health professionals, as well as representatives of pharmaceutical companies.

Scientists and health economists have reported on the rights and health of patients with rare diseases. More specifically, Professor Yiannis Yfantopoulos talked about the economic and social dimensions of rare diseases, while Professor Lionis developed the issue of Primary Care for Patients with Rare Diseases. Mr. Vidalis , Sci. Associate of the National Bioethics Committee and Associate Professor Director of IASI, referred to the sensitive issue of medical responsibility, while Mrs Georgiadou, Pharmacist and General Inspector of the Health Expenditure Audit Service (EEPYFKA) EOPYY, talked about the solution of the practical issues that arise in the provision of patients' healthcare.

Then Mrs. Koilia , Doctor - Allergist of Children and Adults, Euroclinic Adult collaborator, Sci. Associate Second Pediatric Clinic Medical Center of Athens, Chairman of the Provisional Board of PESPA, referred to the state approach to patient rights, highlighting their needs in particular.

The Doctor of the University of Athens, Mrs. Laina-Zacharopoulou, mentioned the benefits of participating patients in conferences concerning rare diseases because it is a fact that in addition to the information they receive about their illness they have the opportunity to get to know each other. Finally, Ms. Paximadis , a biologist and patient, analyzed and traced the participants about the rights of patients and what they need to know about cross-border care , especially when their illness is not treated in Greece.

The speeches sparked public participation in dialogue , pointing to the multidimensional nature of rare diseases, the many problems faced by patients, and the positive attitude that many of them maintain, fighting without losing their hope and love for life! Patients stated that "it is totally compassionate to know that they have close bodies and scientists in this difficult struggle they face every day." This has given hope and strength to everyone, organizers and participants, in order to be able to continue for the sole purpose of the best possible quality of life for patients with rare diseases.