Dr. Ali Davoudian, Managing Director of Rare Diseases Foundation of Iran, met with Dr. Sameen Siddiqi, the WHO Representative in the Islamic Republic of Iran, in Tehran on Wednesday, September 21st 2016.
At the beginning of the meeting Dr. Ali Davoudian gave a short briefing on the activities and goals of the Rare Diseases Foundation of Iran and said:
“The purpose behind the present meeting is to share experiences and exchange views on possible cultural and intellectual cooperation with other countries in the region and the world.”
In return, Dr. Sameen Siddiqi, the WHO representative in Iran who is of Pakistani origin, while expressing his satisfaction over organization of such a meeting that can be considered as a prelude to the two sides’ further cooperation in the future stated: “This is the first time that we see an NGO, without enjoying any assistance from government bodies or international institutions, has afforded to render free of charge services to a large number patients.”
In response to the question raised by the WHO representative about expectations of the Foundation from WHO, Dr. Davoudian saying that the Foundation does not expect any financial assistance because it enjoys sufficient resources in the matter of specialized staff, technologies and knowledge laid emphasis on the failure of the societies in understanding the paramount role of NGOs like the Rare Diseases Foundation of Iran as the Foundation’s prime concern; the problem that is needed to be dealt with properly.
During the meeting Dr. Sameen Siddiqi, the WHO representative in Iran, asked Dr. Ali Davoudian about means and ways of promoting the living quality of rare disease patients. In response the Foundation’s Managing Director said: “Unfortunately there is no decisive cure for rare diseases but we need to make our utmost effort in order to contain progress of such diseases lowering the pains and difficulties facing the patients; we also hope to promote preventive measures in order to prevent birth of newly rare disease affected patients.”
Dr. Davoudian also added: “We are pragmatic and are seeking for action; we hope the WHO Secretary General to see and follow our efforts and then take action.”
On the production of rare diseases medicine Managing Director of the Foundation said that if WHO can prepare the ground then we can invest on production of the medicine required by the rare disease patients particularly those suffering from Ciliac and EB.
In continuation Dr. Davoudian invited Dr. Siddiqi to participate at the 8th World Conference to be held by the Rare Diseases Foundation of Iran on the February 27th 2017 that is marking the World Day of Rare Diseases. In the end of the meeting WHO representative expressed his desire to visit the centers and institutions affiliated to the Rare Diseases Foundation of Iran.