Partner Organizations
International Conference on Rare Diseases and Orphan Drugs
The central secretariat of the International Conference on Rare Diseases and Orphan Drugs is based in Sweden and is regarded as one of the largest global events in the field. As an organizer of meetings and educational workshops, ICORD is committed to advancing research, medical ethics, policymaking, and all activities related to rare diseases and orphan drugs worldwide. Through the organization of global forums and with the participation of governmental authorities and both material and intellectual stakeholders, the conference has generated meaningful and impactful feedback from across the globe. This has ultimately facilitated dialogue among ICORD’s international members on practical strategies for mitigating the challenges associated with rare diseases and orphan drugs.
International Campaign of the Association for Supporting Children with Developmental Disorders
This international association aims to encourage its global counterparts to analyze and improve the process of diagnosing rare developmental disorders in children. To this end, it organizes an annual global campaign in collaboration with its members and associated medical professionals, with the goal of accelerating early diagnosis.
International Society for Neonatal Screening
Focusing on the early detection of rare diseases and disorders during the neonatal stage, this association has taken significant steps toward preventing various rare abnormalities. The high quality of its screening and medical services, alongside effective communication with member families and the exchange of best practices, has contributed to improved management and care of conditions such as phenylketonuria (PKU), congenital hypothyroidism, severe immunodeficiency disorders, and rare blood diseases.
International Society for Rare Epigenetic Cancers
Based in Austria, this organization is primarily focused on clinical research in the field of cancer sciences. It strives to develop early diagnostic tools and innovate in molecular epigenetic mechanisms related to various cancers, metastases, and associated latent diseases. Its mission includes improving disease control and treatment, strengthening patients’ immune systems, reducing the prevalence of such cancers, enhancing patients’ quality of life, and supporting both the material and moral interests of individuals affected by rare cancers.
Asia-Pacific Alliance of Rare Disease Organizations (APARDO)
Headquartered in Singapore, APARDO focuses on the study of rare diseases, including rare cancers prevalent in the Asia-Pacific region. Its primary mission is to amplify the voice of rare disease patients globally and to prioritize their needs. By fostering opportunities for collaboration and engagement among patients, the alliance encourages them to actively participate in shaping their lives. In this regard, it holds annual meetings for its members and patient working groups.
World Heart Federation
Based in Switzerland, the World Heart Federation brings together more than 200 cardiac care institutions, scientists, researchers, civil societies, and rare disease organizations from around the world. It focuses on integrating research efforts related to rare diseases, particularly cardiovascular conditions. The federation includes approximately 100 members who convene annually to discuss new strategies and report outcomes.
Biomedical Research Networking Center for Rare Diseases
Located in Spain, this center serves as a collaborative network of 62 biomedical and clinical research groups working in the fields of genetic, molecular, and cellular biochemical factors influencing rare diseases and disorders. Its key objectives include advancing epidemiological knowledge, conducting continuous research into the causes and mechanisms of rare diseases, and developing precise tools for early diagnosis and treatment.
European Society for Medical and Biological Imaging
This non-profit organization, based in Austria, aims to support educational initiatives and raise awareness by engaging medical specialists, biomedical engineers, scientists, radiographers, and radiologists in the development of advanced MRI techniques across medical and biological fields. Through practical workshops, it has attracted numerous professionals from across Europe and beyond to contribute to training and knowledge exchange.
Spanish Institute for Rare Disease Research
Based in Madrid, this institute operates under the Carlos III Health Institute, which is affiliated with Spain’s Ministry of Health, Ministry of Labor, and Social Welfare. In collaboration with rare disease research consortia, international networks for undiagnosed rare diseases, and the European rare disease biobank network, it conducts extensive scientific and research activities throughout Spain.
French Rare Diseases Alliance
Headquartered in Paris, this alliance encompasses over 200 rare disease patient associations and has recorded data on approximately 2 million patients and around 2,000 types of rare diseases. It is recognized as a leading advocate for rare disease patients and their families. With an efficient organizational structure and 12 regional branches, it is acknowledged as one of the six major policymakers and supporters in the global rare disease landscape.
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…
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