Certificates & Licenses
Licenses and Authorizations
- Obtaining a national license for the operation of non-governmental organizations from the Ministry of Interior
- Organizing Rare Disease Day conferences in coordination with 94 countries worldwide
- Receiving Special Consultative Status from the United Nations Economic and Social Council (ECOSOC)
Honors and Certifications
- Recipient of certification from the European Foundation for Management Development (EFMD)
- Recipient of ISO 9001:2015 certification from TÜV International
- Recipient of the International Personnel Certification (IPC) award and certificate of recognition
International Collaboration and Initiatives
- Collaboration with the global RareConnect network and the addition of the Persian language to its online discussion forum, enabling information exchange among patients worldwide
- Establishment of a national database for collecting information on rare diseases and mapping their geographical distribution across the country
Memberships
- European Organisation for Rare Diseases (EURORDIS)
- International Conference on Rare Diseases and Orphan Drugs (ICORD)
- Rare Diseases International (RDI)
- Conference of NGOs in Consultative Relationship with the United Nations (CoNGO)
- Committee for Rare Diseases (CFRD)
- International Society of Endocrinology and Pediatric Rare Growth Disorders (ICOSEP)
- Society for Epigenetic Rare Cancers (CES)
- International Society for Neonatal Screening (ISNS)
- Asia-Pacific Alliance of Rare Disease Organizations (APARDO)
- European Society for Magnetic Resonance in Medicine and Biology (ESMRMB)
- World Heart Federation (WHF)
- RareConnect Global Network
- Fabry International Network
- World Patients Alliance
- Global Allergy & Airways Patient Platform
The Role of the Rare Diseases Foundation in Strengthening the National Healthcare System
Through a comprehensive and patient-centered approach, the Rare Diseases Foundation of Iran strives to address existing gaps in the diagnosis, treatment, and support of individuals living with rare diseases across the country.
Identification and Registration of Rare Disease Patients
Collecting and maintaining patient data through specialized registries to facilitate access to healthcare services, support programs, and research initiatives.
Specialized Counseling and Guidance
Providing medical, genetic, and supportive counseling services to patients and their families to help them better manage their conditions and improve their overall well-being.
Patient Support and Empowerment
Developing educational, cultural, and support programs aimed at increasing awareness, reducing the challenges faced by patients, and enhancing their social participation and quality of life.
Latest News
Follow the latest news, scientific achievements, support programs, conferences, and announcements related to rare diseases in this section, and stay informed about the most recent developments of the Rare Diseases Foundation of Iran and the rare disease community in the country.
The 4TH volume of the Atlas
The 4TH volume of the Atlas of rare diseases of Iran has been published. The…
Children suffering from EB
Enter by a smile. This is the first thing you see on the door…
Helping doesn’t depend on the number of help wanted
Henoch-Schonlein Purpura (HSP) is kind of rare disease which is less identified and unfortunately,…
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