ICORD is an International Society for all individuals actively involved in rare diseases and/or orphan drugs, including health care, research, academic, industry, patient organisations, regulatory authorities, health authorities, and public policy professionals. The mission of ICORD is to improve the welfare of patients with rare diseases and their families world-wide through better knowledge, research, care, information, education and awareness. One of the main activities of ICORD is the organisation of the ICORD annual meetings, which have been successfully arranged ten times all over the world.
A delegation accompanied by RADOIR’s Chairman and Managing Director of RADOIR attended the 13th annual meeting of ICORD in Stockholm. Dr. HamidReza Edraki, the Managing Director of RDAOIR, and international members of ICORD had lectures on “Future of Rare Diseases and the fulfilled and unmet needs for Rare Patients” and shared their ideas through presenting their papers and case studies. All representatives from RDI (Rare Disease International), CoNGO (Committee of NGOs for Rare Diseases), IRDiRC (Rare Diseases Research Consortium), RareConnect (the global network for the rare patients) and Orphanet (the portal for rare diseases and orphan drugs) shared their point of views and called for the effective solutions.
Meeting session at ICORD 2018:
- “EURORDIS & RADOIR” MOU was countersigned by Mr.Yann Le Cam, CEO at EURORDIS and Mr. Yaser Davoudian, RADOIR chairman, which emphasized on adding Persian language to “Orphanet”, the same as RareConnect.
- RADOIR delegation had a meeting session with the head of Committee for Rare Diseases at UN (CFRD) and the CEO of AGRENSKA as one of the CoNGO members with special consultative status of ECOSOC.
- Senior advisor of NIH (National Institute of Health) invited RADOIR for further collaboration with RDI, IRDiRC and connect them to the Iranian Ministry of Foreign Affairs
- Genetic Alliances of Argentina, India, Japan, Spain, and Russia suggested to collaborate with RADOIR’s genetic approaches for future approaches, accordingly.
- Simon Day, Managing Director at Clinical & Paraclinical center of London also member of the ICORD policy making board presented his proposal at RADOIR.
- RADOIR’s delegation visited Karolinska Hospital University in Sweden accompanied by the CEO and medical team and discussed about the case studies as well as upcoming mutual interactions.