As for many years now, the URGO Foundation has been supporting Debra Poland in August to allow EB patients and their families to gather for a summer camp. This year, 40 families enjoyed a week in the Masurian Lakes region focused on improving the quality of life of their children.
A rare and genetic disease
Epidermolysis Bullosa is a rare and challenging disease that currently affects around 500 patients in Poland. Also known as “Butterfly Kids” because of the fragility of their skin and the early onset of the disease, these patients live with numerous painful wounds on a daily basis, which require highly specialized care.
Improving daily personal care
To strengthen the skills of the healthcare professionals involved in their treatment, as well as the families who ensure continuous care at home, the URGO Foundation is proud to support the association committed to improving their quality of life in organizing this yearly summer camp. This initiative gathered 40 patients of all ages and 20 family members, together with dermatologists, nurses and physiotherapists, to better understand individual situations, identify needs and find the most appropriate treatments for each one. Indeed, this genetic disorder has four main types, each with its own specific characteristics.
Building up a community
The summer camp is also an opportunity for the children and families to spend time within a safe, supportive and non-judgmental environment, alongside peers facing similar conditions and daily challenges. Being part of a community opens the way for discussions, sharing of best practices, combating isolation and providing essential psychological support, which plays a crucial role in coping with EB.
In 2025, the URGO Foundation continues to support EB patients through projects in five countries, pursuing a commitment that began in 2010 with the French Necker Hospital for children, when the Foundation was created.
