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Special edition 014

We are so pleased to launch the latest spotlight edition of RARE Revolution Magazine. This is the fourth edition in our spotlight series sponsored by CSL Behring, focusing on rare disease in the Middle East and Africa (MEA). primary immunodeficiencies in MEA

This edition addresses the complexities of rare disease management in the MEA region through the lens of primary immunodeficiency, with a focus on diagnosis, equity of care and treatment options. It also celebrates the hard work of many dedicated individuals who share a collective aim of improving the health outcomes for those living with PID in the MEA region and worldwide.

The Middle East and Africa (MEA) is a diverse region, never more so than in the care and treatment of those with a rare disease. Cultural, economic and governmental differences all play a part in driving the diversity of this part of the world. In consultation with Prof Ahmed Aziz Bousfiha, we look at the landscape of primary immunodeficiencies in MEA, spotlighting the most prevalent conditions, and exploring issues of access to care, treatments and diagnosis.

Maria Anebane was diagnosed with a primary immunodeficiency (PID) in 2000, in her mid-teens. Now 39, she lives with her husband and four children in Casablanca, Morocco. Maria has encountered many challenges in accessing treatment for her condition and moved to the city to improve her health outcomes. Propelled by her own experiences, she is a staunch advocate in the RARE space and strives to support and improve the lives of others living with PID.

Plasma-derived medicinal products (PDMPs) can prove vital in treating people with rare and chronic conditions, such as immune deficiencies, autoimmune and inflammatory diseases and bleeding disorders. While these therapies are vital, keeping pace with the global demand can be challenging for the plasma industry. Dr Magdy El Ekiaby discusses some of the worldwide initiatives aimed at improving equity of access, particularly for developing countries.

In the heart of vibrant Rotterdam, IPIC 2023, the sixth edition of the International Primary Immunodeficiency Congress hosted by IPOPI saw an unparalleled convergence of nearly 900 attendees from 80 diverse countries. This biennial event, celebrated for its dynamic exchange of knowledge, comprehensive discussions and patient-centric approach, proved to be a pivotal juncture in addressing the complexities of primary immunodeficiencies. Whether illuminating clinical research or fostering interdisciplinary collaborations, IPIC 2023 has firmly positioned itself as an indispensable event in the field of primary immunodeficiency care.

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