Rare Diseases Document awaiting government approval

TEHRAN – The National Document on Rare Diseases, recently approved by the Ministry of Health, is being studied by the cabinet of ministers for final approval, Hamidreza Edraki, CEO of the Rare Diseases Foundation of Iran, has announced.

The Document has been approved in December 2020, with the aim of preventing the birth of infants with rare diseases, medical and therapeutic problems.

Patients with rare diseases launched and signed a petition calling for drawing up a national document on rare diseases on the occasion of Rare Disease Day, February 28, 2019.

The National Document on Rare Diseases, recently prepared in collaboration with the Rare Diseases Foundation and the University of Tehran, was drafted by prominent domestic and foreign experts.

The main vision of this document is to prevent the birth of infants with rare diseases and to solve the medical and therapeutic problems of rare patients in the country.

Edraki said that the strategic document is a big step towards resolving medical and treatment problems and relieving the pain of rare patients, IRNA reported on Monday.

After the approval of the Document, all related bodies will be obliged to take measures in this regard, and the programs will be monitored nationally.

For example, the lack of wound dressing for patients suffering from epidermolysis bullosa is a major problem in the country. In many cases, international organizations provide assistance to these patients, and it is necessary to identify and use them by establishing appropriate communication, he said.

Courtesy of Tehran Times