Cairo: Deputy Prime Minister and Minister of Health and Population Khaled Abdel Ghaffar said Egypt has played a crucial role in combatting rare diseases domestically, in collaboration with corporate partners, and worldwide by supporting the World Health Organization’s (WHO) efforts.
According to State Information Service Egypt, Abdel Ghaffar also emphasized the need for global collaboration to tackle the challenges of rare diseases through early diagnosis, developing effective treatments, securing the necessary funding, and raising awareness about these conditions.
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; representatives from leading healthcare companies; and medical researchers.
Abdel Ghaffar expressed gratitude to Dr Mohamed Hassani for his efforts in advocating 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 on rare diseases.
During his speech, 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, covering 19 genetic disorders, in 2021. In addition, Abdel Ghaffar highlighted Egypt’s expanded treatment efforts for rare pediatric cancers and haematological disorders such as sickle cell anaemia, thalassemia, and haemophilia.
Moreover, he praised corporate partners, including Sanofi, Roche, HVD, and Illumina, for supporting Egypt’s initiatives to address rare diseases. He also expressed appreciation for Alexandra Humber for supporting Egypt and Spain’s efforts to introduce a resolution on rare diseases at the upcoming World Health Assembly and for her strong defence of patients’ rights globally and promoting inclusivity.
For her part, Dr Naeema Said Abid, WHO Representative in Egypt, stated that despite their 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,’ Abid noted.
Similarly, 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.