Activating Awareness of EB and Other Rare Disorders in Africa and MENA Regions

The 1st MENA region and African Epidermolysis Bullosa Congress was held in Cairo, Egypt, marking a historic event as the first international EB conference on the African continent. This international EB conference brought together experts, young health care professionals eager to learn, nursing staff, geneticists, patients and their families. All of these participants were able to experience a program that included everything from best practice care examples, interdisciplinary treatment concepts up to the latest research findings. In addition to presenting successful approaches, the conference also addressed challenges and barriers to optimal patient care within African healthcare systems, fostering group discussions to seek potential solutions. One of the major needs identified during the meeting is access to timely and reliable genetic diagnosis, crucial for developing subtype specific care plans and paving the way for future access to innovative therapies.
There was also a call for easy access to expertise from international centers or experts. Dr. Sophie Kitzmüller, head of EB Clinet, delivered a highly anticipated talk about the established networking, training and support offers from EB Clinet, which led to fruitful discussions about potential new projects.

Dr. Kitzmüller noted, “I realized that we need to proffer different training structures accounting for cultural aspects and different levels of expertize. Currently our work is very Europe and Northern American centric. For the future we need to help raise awareness and increase knowledge about EB across the world. This means to shape our portfolio in a way that every health care professional supporting EB patients worldwide should be able to benefit from our offers.”

The four-day programme definitely reached the organizers’ goal of activating awareness of EB and other rare disorders in Africa and the MENA regions, marking a milestone in the DEBRA Congress series.