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Egypt unveils global rare disease initiative backed by 28 nations at WHO assembly
Published in Amwal Al Ghad on 20 - 05 - 2025

Egypt has unveiled on Tuesday a landmark international initiative to support over 300 million people living with rare diseases worldwide, in a move hailed as a major step toward global health equity.
Announced during a high-level event on the sidelines of the 78th World Health Assembly in Geneva, the initiative is co-led by Egypt and Spain and supported by 28 other countries. It aims to strengthen healthcare systems, expand access to diagnosis and treatment, and promote scientific research focused on rare conditions that often go undetected or untreated—especially in low- and middle-income countries.
World Health Assembly is the decision-making body of the World Health Organisation (WHO).
"There is an urgent need to address the challenges faced by individuals living with rare diseases," said Khaled Abdel Ghaffar, Egypt's Deputy Prime Minister and Minister of Health and Population, during the event hosted at Egypt's Permanent Mission to the United Nations in Geneva.
"For the first time, rare diseases are being recognised as a global public health priority—not just in high-income countries, but everywhere," he said according to a ministry statement. "Health is a non-negotiable human right."
The event brought together top health officials from 18 countries, WHO Director-General Tedros Adhanom Ghebreyesus, and private sector leaders, including representatives from AstraZeneca and HVD Global. It also featured emotional testimonials from rare disease patients from Egypt and Spain, spotlighting gaps in care and the need for stronger international collaboration.
Deputy Prime Minister Abdel Ghaffar said Egypt has already made significant strides through presidential initiatives like newborn screening programs, premarital testing, and a national plan for genetic and rare disease detection. The country is working to establish a sustainable, integrated care system focused on early diagnosis and equitable treatment access.
AstraZeneca Vice President Souhaila Bekkali called the resolution a pivotal step that will help shape more inclusive health policies, accelerate innovation, and improve access to life-saving therapies. She also praised Egypt's partnership with AstraZeneca to localise advanced genetic testing and precision medicine.
Hermanous Van Deyn, Chair of HVD Global, said the company's work with Egypt reflects a deeper commitment. Rare disease care is not just a technical challenge—it's a human obligation, he said, noting efforts to equip Egyptian labs with cutting-edge diagnostics.
The initiative comes as momentum builds for more inclusive health systems, with Egypt positioning itself as a leader in advocating for patients often overlooked in global health discussions.


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