Egypt Launches First National Rare Diseases Forum, Unveils Comprehensive Patient Support Strategy
核心洞察
Egypt held its first national rare diseases (搜索) forum, organized by the Mersal Foundation (搜索), marking over a decade of advocacy work to elevate rare diseases as a national priority.
The Ministry of Health announced a national rare diseases (搜索) registry, regional centers of excellence, and a dedicated funding mechanism integrated into the Universal Health Insurance System.
A national scientific committee identified 12 rare diseases (搜索) as priority conditions for centralized government support based on scientific criteria ensuring equitable and sustainable care.
Egypt has launched its first-ever national forum dedicated to rare diseases (搜索), unveiling a comprehensive set of measures designed to strengthen diagnosis, treatment, and financial protection for patients living with these conditions. The Mersal Foundation (搜索) Rare Diseases Forum 2026 brought together government officials, international health organizations, and civil society groups to coordinate action on an issue now designated as a key priority under Egypt's National Health Strategy 2024-2030.
Speaking at the forum's opening, Minister of Health and Population Khaled Abdel Ghaffar said rare diseases (搜索) are being integrated into the country's Universal Health Insurance System, with a strategy focused on early diagnosis, streamlined referral pathways, and financial protection for patients and their families.
National Registry and Priority Disease Framework
A cornerstone of the new strategy is the establishment of a national registry for rare diseases (搜索), alongside the creation of regional centres of excellence. Abdel Ghaffar revealed that a national scientific committee has identified 12 rare diseases as priority conditions eligible for centralized government support, selected based on scientific criteria designed to ensure fairness and sustainability in care delivery.
The minister also announced the creation of a dedicated rare diseases (搜索) fund, which forms part of Egypt's broader effort to strengthen diagnosis, referral pathways, and financial protection mechanisms. The government is simultaneously expanding presidential initiatives for the early detection of hereditary and rare diseases.
Medicine Access and Regulatory Priorities
Egyptian Drug Authority (搜索) Chairperson Ali El Ghamrawy emphasized that ensuring the availability of medicines for rare diseases (搜索) remains one of the authority's top priorities. He outlined a three-pronged approach: expanding access to innovative therapies, promoting local pharmaceutical manufacturing, and strengthening regulatory oversight and supply chain monitoring to improve medicine availability and secure a sustainable supply.
International and Civil Society Collaboration
World Health Organization Representative in Egypt Nima Abid praised the country's progress in expanding early screening programmes and improving diagnosis and treatment services. Abid reaffirmed the WHO's commitment to supporting initiatives that enhance the quality of life for patients living with rare diseases (搜索).
Hazem Khamis, Health Adviser to the Minister of Social Solidarity, called for closer coordination among government institutions, civil society organizations, and the private sector to provide integrated medical, social, and psychological support for patients and their families. Nabila Makram, Head of the Technical Committee of the National Alliance for Civil Development Work, echoed this sentiment, stating that rare diseases (搜索) require greater national attention and coordinated action to ensure patients receive appropriate care.
A Decade of Advocacy
Closing the forum, Mersal Foundation (搜索) Chairperson Heba Rashed described the event as the culmination of more than a decade of work on rare diseases (搜索). She said the forum represented an important step towards establishing the issue as a national priority through broad-based partnerships among government, healthcare institutions, and civil society. Rashed emphasized that the goal was to elevate rare diseases into a national priority through coordinated action among all stakeholders.