Founder

A Narrative of the Life and Services of the Late Dr. Ali Davoudian

The late Dr. Ali Davoudian, a great and steadfast man who brought life to even the driest of timbers, was born in 1959 into a devout religious family in the village of Bahnemir, a district of Babolsar.

He completed his primary education in his hometown and pursued his secondary education in Tehran Province. Alongside his studies, he worked in a printing house, and after completing his education, he went on to establish 34 cultural and economic projects across the country, remaining active until the final moments of his life.

Following the Islamic Revolution, he collaborated with the office of Grand Ayatollah Golpayegani—one of the most prominent religious authorities—in providing healthcare and medical services to the underprivileged. His youth and middle age were devoted to charitable endeavors, including the construction of schools, mosques, and hospitals in cooperation with other benefactors.

Due to the lack of medical facilities in his village, all of his siblings born before him had passed away from illness. In a vow of hope, his mother promised to name her next child “Darvish Ali.” Thus, Ali Davoudian became the cherished child who survived, bringing renewed life and hope to his parents. His mother later advised him that if he ever attained wealth, he should dedicate it to serving the sick and the needy—a counsel he faithfully upheld throughout his life.

In 2007, upon encountering a child suffering from the rare condition Epidermolysis Bullosa (EB), also known as “Butterfly Disease,” he was deeply moved and resolved to establish a foundation to support patients afflicted with such illnesses.

After extensive research into these conditions—commonly referred to as rare or orphan diseases—he successfully founded the Rare Diseases Foundation of Iran in 2008, obtaining official authorization from the State Welfare Organization. On November 8, 2009, coinciding with the birth anniversary of the Eighth Imam (peace be upon him), the foundation formally commenced its activities as the sole authority dedicated to addressing the needs of rare disease patients in Iran.

In addition to the foundation, he established a comprehensive medical imaging center, a specialized rare diseases clinic, a pathology laboratory, and a psychological counseling center to expand the scope of support and services. Notably, patients with rare diseases received services from these centers free of charge.

With a vision to expand the foundation’s activities nationwide, Dr. Davoudian opened branches in Golestan and Kermanshah provinces. In August 2017, he inaugurated a specialized clinic dedicated to rare disease patients.

His efforts were not confined to national activities. Over the years, he actively participated in international meetings, congresses, and seminars held in cities such as Geneva, New York, France, Beijing, and Budapest. During 2016–2017, he earned a seat on the United Nations Committee on Rare Diseases, became a member of the European Rare Diseases Organization, and joined several other international bodies in this field.

On October 7, 2016, Dr. Davoudian was recognized as one of Iran’s distinguished and enduring figures in management at the First National Congress of Eminent Scholars organized by the Development and Research Foundation, where he was awarded a national medal.

The activities of the Rare Diseases Foundation of Iran expanded steadily, leading to the establishment of 18 rare disease associations and 8 non-rare disease associations under its support. It is estimated that approximately 150,000 patients benefited from the foundation’s medical services. However, in the relentless passage of time, the compassionate “father” of Iran’s rare disease patients passed away on the evening of October 28, 2017, due to cardiac arrest.

This resilient and noble figure departed from this world with a wealth of aspirations and dreams aimed at alleviating the medical and social challenges faced by rare disease patients and their families, leaving behind profound sorrow among his family, colleagues, patients, and the medical community.

The enduring concern and vision of the late Dr. Davoudian, along with his persistent recommendations over twelve years to support rare disease patients, inspired the Board of Trustees and the Board of Directors of the Rare Diseases Foundation of Iran to continue his noble path and uphold his compassionate outlook as their guiding light.

Accordingly, Engineer Yaser Davoudian, his eldest son, was appointed as Chairman of the Board, and Dr. Hamidreza Edraki, his long-time associate, was appointed as Chief Executive Officer of the foundation.

Thus, the luminous torch of this foundation was entrusted to capable hands, whose mission is to navigate the challenging path of rare disease patients in Iran, enabling them to live with dignity and peace.

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