There are 1.2 million people in Iran living with some type of a rare disease, said Dr. Ali Davoudian, founder of the Rare Disease Foundation of Iran (RADOIR).

On the occasion of World Rare Diseases Day (marked globally on the last day of February), the Rare Diseases Foundation of Iran (RADOIR) is holding an essay writing contest for students across all schools in Tehran Province.

here are presently 620 NGOs in the country working under the supervision of the Health Ministry, said Mostafa Jamali, head of the ministry’s Non-Governmental Organizations Office, on Sunday.

The Health Ministry is preparing a support package for hard-to-treat diseases in the country.

On the initiative of the Rare Disease Foundation of Iran and in collaboration with the Rare Diseases Europe (EURORDIS), a non-governmental patient-driven alliance of rare disease patient organizations, a rare diseases committee was established at the United Nations Headquarters in New York.

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.

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.