His remarks came during his speech at the Rare Disease Day celebration, organized by the Ministry of Health and Population. The event was attended by Dr. Ahmed Taha, Chairman of the General Authority for Healthcare Accreditation and Regulation; Dr. Mohamed Hassani, Assistant Minister of Health for Public Health Initiatives; Dr. Naeema Said Abid, WHO Representative in Egypt; Alexandra Humber, CEO of the International Rare Diseases Organization; as well as representatives from leading healthcare companies and medical researchers.
In this context, the Deputy Prime Minister extended his gratitude to Dr. Mohamed Hassani for his efforts in advocating for Egypt’s sponsorship of a resolution expected to be adopted at the 78th World Health Assembly in May. This resolution, co-sponsored by Spain, has gained the support of 26 WHO member states and 230 non-governmental organizations working in the field of rare diseases.
During his speech, Dr. Abdel Ghaffar highlighted the humanitarian aspect of rare diseases, which impose both financial and emotional burdens on Egyptian families. He pointed out that some rare diseases lead to early childhood mortality. He also reviewed Egypt’s 25-year-long efforts in expanding neonatal screening programs and launching a sustainable national program for rare disease screening in 2021, which covers 19 genetic disorders. Furthermore, he highlighted Egypt’s expanded treatment efforts for rare pediatric cancers and hematological disorders such as sickle cell anemia, thalassemia, and hemophilia.
The Deputy Prime Minister also commended the contributions of corporate partners, including Sanofi, Roche, HVD, and Illumina, in supporting Egypt’s initiatives to address rare diseases. He also expressed appreciation for Alexandra Humber, CEO of the International Rare Diseases Organization (RDI), for her exceptional advocacy in defending patients’ rights globally and promoting inclusivity. He acknowledged her pivotal role in supporting Egypt and Spain’s efforts to introduce a resolution on rare diseases at the upcoming World Health Assembly.
WHO Representative in Egypt: Egypt at the Forefront of Rare Disease Efforts
Dr. Naeema Said Abid, WHO Representative in Egypt, stated: “Despite their individual rarity, rare diseases collectively affect more than 300 million people worldwide, according to WHO statistics. There are approximately 5,500 globally recognized rare diseases. Egypt has been at the forefront of efforts to address rare diseases and has spearheaded a resolution at the World Health Assembly, scheduled for 2025, to tackle the challenges facing the rare disease community through a comprehensive global framework. This initiative will enhance awareness and foster greater collaboration on these conditions.”
Sustainable Healthcare Systems Are Key to Improving Patient Outcomes
Alexandra Humber, CEO of the Rare Diseases Organization, emphasized the importance of transforming political will into tangible actions. She outlined the fundamental priorities in global efforts to combat rare diseases, stressing that establishing a sustainable healthcare system is critical to improving the health outcomes of rare disease patients.
Sanofi Egypt & Africa’s Chief Medical Officer: Public-Private Sector Collaboration Is Key to Creating an Optimal Environment for Patient Welfare
Dr. Sherif Roushdy, Head of Medical Affairs of Sanofi Egypt & Africa, expressed his appreciation for participating in the Ministry of Health’s event on International Rare Diseases Day. He emphasized that collaboration among the public sector, private sector, and NGOs—under the Ministry of Health’s leadership—is fundamental in creating an ideal healthcare environment for patients.
He added “ Sanofi remains committed to raising awareness through rare disease initiatives. Recently, Sanofi Egypt played a key role as a main sponsor of the Rare Disease Awareness Marathon. Additionally, our participation in today’s event reflects our ongoing commitment to working alongside the Egyptian Ministry of Health to achieve sustainable positive impacts. Beyond offering the latest treatments for rare diseases, Sanofi has demonstrated its dedication through initiatives such as the Gaucher Disease Program, which has been running for over 25 years in partnership with the Hope Foundation to provide ongoing support and treatment for rare disease patients.”
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