EURORDISECOSOCICORDRDI

Rare diseases patients without borderpe

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Goals & Objectives

With the purpose of improving living quality of the individuals affected by rare diseases and further development of rare diseases medical centers and services, Rare Diseases Foundation of Iran is pursuing following goals and mandate:

  1. Embarking on cooperation with its corresponding Iranian organizations including public and private ones as well as NGOs within the framework of relevant rules and regulations
  2. Carrying out research and field studies on rare diseases and their impacts upon the affected individuals
  3. Raising awareness on the rare diseases and absorbing as well as extending financial support (in cash or else) in favor of the affected individuals and the disabled and the handicapped suffering from rare diseases after receiving the required permits from the concerned authorities
  4. Identifying individuals suffering from different rare diseases. Preventing further occurrence of rare diseases and supporting and empowering the affected individuals
  5. Supporting establishment of Rare Diseases Foundation of Iran’s representative offices and branches and further empowering them through financial and structural assistance
  6. Publication of rare diseases specialized journals after receiving the required permits from the concerned authorities
  7. Holding workshops, seminars and scientific conferences on rare diseases and the methods for empowerment and rehabilitation of the affected individuals upon receiving of the relevant permits
  8. Extending and carrying out social, judicial and economic assistance in favor of rare disease patients and their families
  9. Establishment of centers for extending supportive, prevention and empowerment services like rare diseases counseling, educational and empowerment centers after receiving the relevant permits