LCCF of "Sister Dalila" participated in Summer School Eurordis 21/06/2015
We are sincerely grateful to the leaders of Eurodis and the organizers of Eurodis Summer School and all the speakers for an excellent opportunity to participate in a 5-day training and to represent the interests of patients with pulmonary hypertension at the European level. Every day we were discovering new concepts, medical terms related to clinical trials of drugs and ethical aspects of medicines and we got familiar with the various regulatory processes of drug development and its phases. During the course of Eurodis Summer School, we also heard about the assessment of medical technologies, including the benefit from drugs (survival, quality of life); the cost of drugs and drug evidence (systematic review and meta-analysis).
LCCF of "Sister Dalila" had the honor to get acquainted with the activities of the European Medical Agency (EMA), which consists of seven scientific committees (including pediatric committee) headquartered in London. Unfortunately, EMA gives scientific advice only to EU member states. The Agency is responsible for assessing the quality, effectiveness and safety of medicines and supervision of drugs on the market. We hope that in the near future we will find ways of cooperation with EMA.
The benefits of Eurodis Summer School are obvious both for researchers and for patient representatives. Everyone had a chance to speak, ask questions and hear concrete answers from leading European medical specialists. All topics which were covered during Eurodis Summer School are of scientific novelty and are relevant for each patient who suffers from a rare disease and for each researcher engaged in the research and development of drugs. Thank you for the opportunity to cooperate with you and for invaluable experience which you professionally transmit to others.
We express a special gratitude to you for the friendly atmosphere that you were able to create, representatives of many nationalities united in one European community, which has been the voice of many patients with rare diseases. Representatives of patients and researchers shared their experience in fighting their concrete disease. Maybe our interests do not intersect, because all diseases are different, but we pursue the basic objective - saving the human life.