10th to 12th May : European Conference on Rare Diseases in Vienna ( Austria). Three rich and intense days of great exchanges. Over 800 attendees among which over 300 patients and patient representatives, 58 countries represented, over 200 posters – figures that describe very well the importance of that event.
10th May : A marathon day with the Annual General Meeting of Rare Diseases International during which were approved the official statutes and registration of RDI as a non-profit under the French law of 1901 ;
Then the meeting of the patient representatives in the ERNs ( ePags), bringing together over 90 patient representatives from the 24 ERNs to take stock of progress to date and to discuss critical topics such as the ePAG Constitution and Rules of Procedure, clinician-patient partnership and clinical guidelines ;And, at the end of the day, Eurordis. Annual General Meeting.
On that day, Wafa Chaabi, Chair of the organisation « The moon children » (Xeroderma Pigmentosum), and Marie-Claude Boiteux physically met for the first times even though they have been writing to each other for a long time via various working groups in the community of rare dermatologic diseases. A very nice and surprising meeting, full of shared interest and mutual recognition, especially surprising when they discovered their geographic nearness.
11th May : 1st Day of the conferences and information on the theme : « Rare Diseases 360° : Collaborative strategies to leave no one behind ». Fringe sessions included: The Structure of research and diagnostic landscape; Breakthrough medicines on the horizon; The Digital Patient; Quality of Life : Making what matters, matter; Economic Perspectives in Rare Diseases; Global equitability for rare conditions : Are we there yet ?
12th May : 2nd Day of the conferences during which our Chair, Marie-Claude Boiteux, took part in the debate « CPMS : Theory vs Real Life ». CPMS (Clinical Patient Management System) is the online consultation system set up in the ERNs which allows several doctors/experts, specialists, wherever they are, to discuss together, online, the case of a patient suffering from a rare disorder. This care and diagnostic tool is an extraordinary opportunity, but it raises many ethials, privacy and patient’s consent issues as the system must also comply with the laws and regulations of each country in the European Community.
Strong, gripping, motivating days, full of encounters and totally dedicated to Rare Diseases.