Arrival of EURODIS delegation in Tehran on July 25th 2016

According to the Department for Public Relations of the Rare Diseases Foundation of Iran, in order to find out about therapeutic and research achievements made by the Foundation, EURODIS delegation arrived in Iran on July 25^th 2016. Explaining on this visit, Dr. Ali Davoudian, Managing Director of the Rare Diseases Foundation of Iran, stated that out of the major purposes behind the visit of the EURODIS delegation we need to refer to exchange views on different relevant issues as well as information and experiences of the two sides’ units that are rendering supportive and research services and to become familiarized with the achievements made by Iranian scientists in dealing with and treatment of rare diseases.

So far, 350 EB (Epidermolysis bullosa) patients have registered at the specialized health house for the group, said Seyyed Hamid Reza Hashemi Golpayegani, head of EB group at the Iranian Rare Disease Foundation (RADOIR). “The number is estimated to reach 500 by the end of the current Iranian year (March 20),” he said, IRNA reported.

he head of Iranian Rare Diseases Foundation has announced the establishment of a specific association for the rare disease neurofibromatosis in the country.

From the beginning of establishment, the Rare Disease Foundation of Iran was determined to form a complete Cultural-Educational complex with skilled and capable staff in order to reach its goals and giving better services.

Acommittee for rare diseases will be set up at the Health Ministry to provide more efficient services to patients, said deputy health minister Mohammad Hadi Ayazi.

An amusement park in Hamedan Province was declared a “philanthropist park” by the Iranian Red Crescent Society for its initiative to serve children with rare and hard-to-treat diseases, including cancer, free of charge.

There are no exact statistics as to how many people currently suffer from rare diseases in Iran and reliable data must be produced under the supervision of the ministry of health, Hamed Asghari, social and cultural deputy of the Rare Diseases Foundation said.

Each year, the last day of February is internationally observed as the “Rare Disease Day”. It is intended to raise awareness about some of the most life-threatening or chronically debilitating diseases throughout the world. The Rare Diseases are of such low prevalence that special worldwide efforts are needed to effectively address this bullying challenge.