Endo-ERN ePAG contributes to publication on rare disease care in the Middle East

Endo-ERN ePAG member Johan de Graaf contributed to a recent paper examining key challenges and priorities for rare disease care in the Middle East.

The study highlights the need for national registries, greater awareness, stronger multidisciplinary collaboration, better involvement of patients in decision-making, and improved access to diagnostics and treatment.

Many of these priorities reflect areas in which Europe has made significant progress through the European Reference Networks (ERNs). By connecting specialist centres across countries, supporting multidisciplinary expertise, strengthening patient involvement and encouraging collaboration on registries, guidelines and care pathways, ERNs are helping to improve care for people living with rare diseases across Europe.

The paper underlines the value of coordinated, patient-centred approaches and international collaboration in strengthening rare disease care.