
#4 - InfoRARE (July - August 2023)

I. FOCUS
July 27. Organizing of the "Newborn Screening" conference. In July, we continued to support the newborn screening campaign as part of the Share Experience 2023 series. The event was organized (online) on July 27 and the main topic was: the most effective methods of screening neonatal screening for the detection of serious congenital conditions and the need to improve neonatal screening in Romania. We had as key speakers: Prof. Dr. Cristina - Adela Iuga, MedFuture Cluj and UMF Iuliu Hațieganu Cluj - Napoca, Dr. Jolanta Sykut -Cegielska, associate professor at the Mother and Child Institute, Warsaw, Poland and Simona Belagambi, Italy, the vice president of EURORDIS. The event was moderated by Dorica Dan and organized by the National Alliance for Rare Diseases Romania and the Romanian Association of Rare Cancers with the support of Sanofi, Novartis, Bristol Myers Squibb, Janssen and UCB.
https://www.facebook.com/anbraromania/videos/242244372088491

August 4th. Organizing the ECOU - Oradea intersectoral meeting. As part of the Community Education for the Organization and Follow-up of Patients with Rare Diseases project - ECOU, we organized a new intersectoral meeting in which we had representatives of patient associations, relatives, specialists, experts from Expert Centers, representatives of local authorities, DSP DAS, DGASPC, the National Health Insurance, representatives of the authorities, hospital managers and health program coordinators. The debate organized in Oradea was extremely useful to find out what the needs really are in the field of rare diseases, from the perspective of each stakeholder.
https://www.crisana.ro/stiri/sanatate-8/situatia-pacientilor-cu-boli-rare-o-prioritate-pentru-cas-bihor-196560.html?fbclid=IwAR2nFyl2TSVdLEUJShHMEHEZ8NP1Xx_Jj4_dAGI3irEtV2qOAvEHzROZThY





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