Rare Diseases Foundation of IRAN
The Rare Diseases Foundation of Iran is a national and international non-profit organization. It was established in 2008 in response to a significant gap in Iran’s healthcare system and the absence of an institution dedicated to supporting rare disease patients, through the efforts of Dr. Ali Davoudian.
The term “rare” or “orphan” refers to a group of diseases that are generally of genetic origin and affect approximately 1 to 5 individuals per 10,000 people.
The Role of the Rare Diseases Foundation in Strengthening the National Healthcare System
Through a comprehensive approach, the Rare Diseases Foundation of Iran seeks to reduce existing gaps in the areas of diagnosis, treatment, and support for patients affected by rare diseases across the country.
Supporting Patients and Their Families
By providing a range of support services, the Foundation strives to alleviate the psychological, social, and financial burdens of rare diseases on patients and their families.
Facilitating Diagnosis and Specialized Referral
One of the Foundation’s key services is to assist in the timely diagnosis of rare diseases through coordination with specialized centers and subspecialist physicians.
Public Awareness and Education
Through campaigns, content production, and public education initiatives, the Foundation works to enhance awareness among both the general public and healthcare professionals regarding rare diseases.
Establishing a Data Registry
A major initiative of the Foundation is the collection and registration of patient data within a national registry system for rare diseases.
Financial Support and Access to Treatment
In certain cases, and in collaboration with relevant institutions, the Foundation helps cover the costs of medications, treatments, and medical services for patients.
Advocacy for Patients’ Rights
The Foundation plays an active role in advocating for the rights of rare disease patients and collaborates with governmental bodies to improve legislation and healthcare coverage.
What is “Nadercast”?
“Nadercast” is a podcast series and educational audio content focused on the field of rare diseases in Iran, produced or supported by the Rare Diseases Foundation of Iran.
The program aims to raise public awareness about rare diseases, share patients’ experiences, feature discussions with physicians and specialists, and explain the scientific, social, and therapeutic aspects of these conditions.
Nadercast seeks to present complex medical concepts in a simple and accessible language for the general public. Alongside the Atlas and other initiatives of the Foundation, it plays a significant role in promoting awareness and supporting rare disease patients across the country.
Atlas of Rare Diseases
The Atlas of Rare Diseases of Iran is a comprehensive and systematic scientific resource developed by the Rare Diseases Foundation of Iran in collaboration with medical universities and a wide range of specialists. Its primary objective is to identify, classify, and provide accurate information on rare diseases within the country.
This atlas includes detailed descriptions of diseases, clinical manifestations, genetic and non-genetic causes, diagnostic methods, and therapeutic or care approaches. It serves as an essential reference for physicians, researchers, and health policymakers.
A Rare Diseases Atlas is a structured dataset that typically includes the following components:
Disease name and classification code (such as the ORPHA code)
Genetic background and underlying causes of the disease
Clinical manifestations
Diagnostic methods
Available treatments or supportive care options
Partner Organizations
Peer organizations and partner non-governmental associations collaborating with the Rare Diseases Foundation of Iran play a vital role—through the synergy of knowledge, experience, and supportive capacities—in enhancing public awareness, supporting patients and their families, and advancing specialized services.
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.
The 4TH volume of the Atlas
The 4TH volume of the Atlas of rare diseases of Iran has been published. The…
Children suffering from EB
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Helping doesn’t depend on the number of help wanted
Henoch-Schonlein Purpura (HSP) is kind of rare disease which is less identified and unfortunately,…
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