In The Name of God, The Beneficent & The Merciful
Pain and sufferings of a disease will ruin the patient’s patience and the strength of his family unless by receiving sympathy and empathy from the society that never ever leaves him alone and helpless which also makes him leaning on the Omnipotent God for the strength when life is overwhelming, morally and financially.
The 8th of Esfand (27th February) officially dominated “National Rare Diseases of Iran” to support the Iranian Rare Patients. I hope the day denominated in the Iranian calendar to be a different day in this year for the rare patient’s communities, calling for public attention, media and the authorities promising the better days for the patients as well as promoting the country’s social capital, potentiality. Patients suffering from the rare diseases feel lonely and anxious much more than the others due to the lack of access to the orphan drugs, the expertise specialists and high cost of pharmaceuticals and the necessary medical equipment for the rare patients’ treatment. Each member of the Iranian society feels the rare patients’ pains and grief deeply in heart as a public health challenge. We will do our full and best in our country to remove their pains and sorrows.
The necessary expertise to treat, having access to the orphan drugs as well as the relevant medical equipment and providing the moral and financial supports for these patients and their families have been prioritized and instructed for each Iranian authority and entity. The Government should promote public awareness raising about the rare diseases and their prevention, education, sign and symptoms, consequences, communicating with the rare patients, meeting their unmet treatment needs for orphan drugs and medical equipment as a significant obligation in taking action. Based upon the approval of “The National Strategic Plan for Rare Diseases in Iran”, it is forcefully assigned to the Ministries of Health & Medical Education, Labor & Social Welfare, Education and the organizations of State Welfare, The Imam Khomeini Relief Foundation and all the relevant organizations and centers. In accordance with the vulnerability of rare patients, their immunization and treatment should be considered of high priority during Pandemic COVID-19 by the Ministry of Health & Medical Education.
In the end, the immense efforts and efficient proceedings by the public groups, medical personnel and all the colleagues at various governmental sector are highly appreciated. I hope to make the national strategic plan for rare diseases in Iran such effectively in near future for the kind attention of the rare patients and people of our country accompanied by the respected Islamic parliament of Iran. My fulfilled wishes reminded of God’s grace and almightiness for all the patients and my sincere appreciation to the compassionate healthcare entities and personnel of the Rare Diseases Foundation of Iran (RADOIR) for their hardworking and immense support of the Iranian rare patients and their families despite of the imposed offensive sanctions.
Seyyed Ebrahim Raisi
President of the Islamic Republic of Iran