Organization of the first meeting between the Iranian rare diseases societies and Director General for NGOs of the Ministry of Health and Medical Education of the I.R. Iran on July 2nd 2017 with the purpose of discussing pharmaceutical, economic and social problems facing rare disease patients.
At this meeting, directors of the societies raised and discussed demands and needs of the said societies as well as problems they are facing.
Dr. Ali Davoudian: Rare diseases are those diseases that affect less than five in every ten thousand individuals. This is the common worldwide definition of what constitutes a rare disease. Therefore any disease that affects fewer than forty thousand patients is called as rare disease.
Dr. Seyyed Mohammad Hadi Ayazi: Operation of the rare diseases network and federation has already been included in the agenda of the Department for Social Affairs of the Ministry of Health and Medical Education of the I.R. Iran.
Organization of the first meeting between the Iranian rare diseases societies and Director General for NGOs of the Ministry of Health and Medical Education of the I.R. Iran on July 2nd 2017 with the purpose of discussing pharmaceutical, economic and social problems facing rare disease patients.
Close and intimate talks between directors of the Iranian rare diseases societies and Dr. Ayazi, Deputy Minister of Health and Medical Education for Social Affairs.
Amir Mohammad Sobhani, MPS patient: I am a human being and I have the right to live. To continue my life I need enzyme.
Meeting between great family of rare disease patients, Deputy Minister of Health and Medical Education for Social Affairs and Director General for NGOs.●Iran Pezeshk: At the meeting held between representatives of the Rare Diseases Foundation of Iran and representatives of the member societies, directors of the societies raised and discussed demands and needs of the said societies as well as problems they are facing.
At the meeting with the Ministry of Health authorities; Mr. Kavah Khadem Hossein, Managing Director of the Society for Ichthyosis affected patients: “The main problem facing Ichthyosis affected patients is of visual nature. We need awareness raising campaign within the community.”
At the meeting with the Ministry of Health authorities; Ms. Dr. Leila Juybari, Managing Director of Neurofibromatosis Society: “The main problem facing Neurofibromatosis patients is lack of insurance coverage. Unfortunately dermal Neurofibromatosis surgery is considered as a beauty (plastic) surgery”.
At the meeting held to discuss problems facing the rare diseases societies and NGOs; Dr. Ayazi: “We need to speed up registration process of the rare disease patients”.
At the meeting with the Ministry of Health authorities; Mohammad Hatami, representative of the Gaucher’s Disease Society: “With respect to the medicine, rare disease patients are in the state of limbo”.