List of Rare Diseases

لیست بیماری های نادر ایران

Rare diseases are generally chronic, progressive, and often debilitating conditions that gradually impair an individual’s ability to carry out daily activities. The statistical definition of these diseases varies across countries.

In Iran, a rare disease is defined as a condition with a prevalence of fewer than 5 cases per 10,000 individuals. In the United States, rare diseases are defined as those affecting fewer than 200,000 people in the total population, while in Europe, the threshold is set at 1 in 2,000 individuals.

Currently, approximately 300 million people worldwide are living with rare diseases. In fact, it is estimated that 1 in every 20 individuals will encounter a form of rare disease at some point in their lives.

Last Updated: 2016/05/14

The Role of the Rare Diseases Foundation in Strengthening the National Healthcare System

Through a comprehensive and patient-centered approach, the Rare Diseases Foundation of Iran strives to address existing gaps in the diagnosis, treatment, and support of individuals living with rare diseases across the country.

Identification and Registration of Rare Disease Patients

Collecting and maintaining patient data through specialized registries to facilitate access to healthcare services, support programs, and research initiatives.

Specialized Counseling and Guidance

Providing medical, genetic, and supportive counseling services to patients and their families to help them better manage their conditions and improve their overall well-being.

Patient Support and Empowerment

Developing educational, cultural, and support programs aimed at increasing awareness, reducing the challenges faced by patients, and enhancing their social participation and quality of life.

Latest News

Follow the latest news, scientific achievements, support programs, conferences, and announcements related to rare diseases in this section, and stay informed about the most recent developments of the Rare Diseases Foundation of Iran and the rare disease community in the country.

By registering with SABNA, be the voice of rare disease patients.

Join the SABNA system today and accompany us in our mission to improve the quality of life for rare disease patients.