ACURARE 1st Scientific Advisory Board Meeting was held on 12 June 2019.
Advisory Board Members, Ministry of Health of Turkey Pharmaceuticals and Medical Devices Agency (TİTCK), İstanbul Provincial Health Directorate, Rare Diseases Network, Cystic Fibrosis Association, MPS and LH Association, Phenylketonuria Association, Albinism Association, Turkey Spastic Children Foundation representatives, faculty and researchers working in the field of rare diseases in various universities, representatives of the private sector and representatives of the ACU Rare Diseases Student Club, attended the meeting. Director of the Center Dr. Prof. Dr. Uğur Özbek gave information about ACURARE and its activities in the last 2 years since its establishment and introduced the European Rare Diseases Joint Project (EJP-RD, ww.ejprarediseases.org) supported by the European Union H2020 program, where ACURARE is also a participant. In the meeting, the opinions and suggestions of public, private sector and patient and patient relatives' representatives were also discussed. In order to work more effectively in the field of rare diseases, plans were made.