ECRD – the European Conference on Rare Diseases & Orphan Products was the largest multi-stakeholder gathering in Europe for the rare disease community covering research, development of new treatments, healthcare, social care, public health policies and support at European, national, regional and international levels.A delegation from Rare Diseases Foundation of Iran accompanied with Mr. Yaser Davoudian, Chairman of the Board and Dr. HamidReza Edraki, the Managing Director, participated in the 9th European Conference on Rare Diseases and Orphan Drugs on May 10th 2018. The Iranian Delegation had a productive negotiation over the collaborations with Mr. Yann Le Cam, CEO for EURORDIS. They discussed implementation of RareConnect (the Global network for Rare Diseases Patients), Rare Barometer (a survey about patients) in Iran and also utilizing Iranian patients of pharmaceutical services.
Besides, a joint letter for European Rare Diseases and the Foundation organized to be passed on United Nations in order to help patients all over the world. At the meeting, Iranian delegation met Dr. Ana Rath, the President for Orphanet in France. The most important issues of this meeting were: the possible ways to join this organization and having scientific and research cooperation in the feature as well as explaining the latest scientific achievements of Dr. Edraki.