TEHRAN (Iran News) – Some 70,000 rare disease patients vaccinated against coronavirus: Some 70,000 patients of rare diseases have received the COVID-19 vaccine so far, Mehdi Shadnoush, head of the transplant management and treatment center of the Ministry of Health, has said.
According to the National Vaccination Document, it was planned to vaccinate rare diseases patients after the elderly, but we requested to give them priority to have a share of the total vaccination.
Rare diseases include peritoneal dialysis, hemophilia, thalassemia, Multiple sclerosis (MS), Spinal muscular atrophy (SMA), Epidermolysis bullosa (EB), Cystic fibrosis (CF), Mucopolysaccharidosis type I (MPS I), autism, organ transplantation, and tissue therapy, patients with primary immunodeficiency disease (PID).
Patients with rare diseases often face a long journey from diagnosis to treatment. There are 540,000 patients in the country, 70,000 of whom received the vaccine, he noted.
All the patients suffering from such diseases will be identified and called by the medical universities based on registration systems to receive the vaccine, he added.
National document on rare diseases
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.
Rare diseases prevalence
According to the statistics published in 2019, the number of rare diseases identified in Iran has reached 332 types of diseases and about 4,750 people are covered by the Rare Diseases Foundation of Iran.
Out of a thousand population, 2 people get a rare disease, while the prevalence can be curbed by changing people’s culture, screening, identifying, preventing the births, and raising awareness.
According to WHO, rare diseases are often serious, chronic, and life-threatening. The European Union (EU) definition of a rare disease is one that affects fewer than 5 in 10,000 people. At present, more than 6000 rare diseases are known; around 80 percent of them are genetic disorders and half of them occur during childhood.
Grouped together, rare diseases affect 6–8 percent (or about 30 million people) out of the 508 million population of EU countries. This roughly equals the estimated prevalence of diabetes in the World Health Organization European Region, which in 2013 was 6.8 percent of 658.7 million adults in the 20 to 79-year age group.
Rare diseases are associated with a high psychological burden for the patient but they can also have a major impact on a patient’s family. In addition to the health burden on patients, few of these diseases have an effective drug treatment available.