Medical Commission

Medical Commission of Rare Diseases Foundation of Iran

The commission is formed to ensure treatment services in curative and diagnosis centers affiliated to Rare Diseases Foundation of Iran, checking the quality and quantity of drugs and equipment, and also other vital issues related to Rare Patients.

Tasks and objectives

• Investigating and summarizing research and determining the prevalence and level of disease rarity
• Investigating clinical documents for patients referred because affecting by rare diseases
• Monitoring rare patients data bank
• Collaborating with international curative relations
• Promoting drug and treatment practices throughout the country
• Introducing new treatments and medications to physicians and other staff working in healthcare system
• Monitoring the progress in treatment and diagnostic process in other branches of the foundation
• handling the treatment result of patients
• coordinating the collaboration between active physicians in Rare Diseases
• Coordinating sustainable collaboration between medicinal sections in different governmental or non-governmental healthcare centers
• Addressing pharmaceutical and treatment deficiencies for rare patients
• Predicting and tracking the supply of medicines, consumable and non-consumable patients’ requirement and also equipment required by rare patients
• Identifying and registering the rare patients in the country
• Determining rare diseases of the country
• Studying and doing research over different types of rare diseases in Iran
• Policy making for patient registry
• Establishing Strategic plan for public awareness

Members:

• Managing Director of Rare Diseases Foundation of Iran
• Chairman of the foundation
• Representative from Ministry of Health and Medical Training
• Representative from three of Medical Science Universities in Tehran
• Research deputy of the foundation
• Scientific deputy of the foundation
• 3 to 5 experts in other fields of study
• Manager of the Clinic
• Pharmacist in charge of the pharmacy
• Laboratory Technical Officer
• Imaging center Technical Officer
• Technical Officer of the Clinic

Remark:

Due to the magnificence of pharmaceutical and treatment issues in hospitals, the commission can invite scientific and executive advisors when it is needed. The commission meeting sessions have to be held monthly and the minutes will be passed to the deputy of Health and Treatment and also to the deputy of treatment for each medical universities in Tehran by Managing Director of the foundation.