DEBRA Greece: A New Beginning for the EB Community in Greece

We are proud to reintroduce DEBRA Greece, the “Greek Association of Epidermolysis Bullosa Patients and their Friends,” a non-profit organization dedicated to supporting individuals and families affected by EB in Greece.

Like many DEBRA organizations around the world, DEBRA Greece was born from lived experience—from the need for understanding, support, and connection in the face of a rare and demanding condition. It was founded in Athens in 2012 by parents of children living with EB, along with people from their close support network. From the very beginning, the vision was clear: no one should face EB alone.

In its early years following its establishment in 2012, the association focused on identifying and connecting patients across Greece, creating a strong network of mutual support among families. At the same time, it worked to raise public awareness of EB, promote understanding of this rare condition, and advocate for the rights and needs of patients. Through outreach, education, and collaboration, the foundation of a supportive community began to take shape.

This journey also highlighted the everyday challenges faced by people living with EB—from access to essential wound dressings to the need for modern and innovative treatments. For many, these are not only medical concerns but fundamental issues of quality of life and dignity.

After a period of inactivity, a renewed effort began in 2023 to revive the association. In 2025, DEBRA Greece resumed its activities with increased member participation and new energy. In 2026, it joined Rare Diseases Greece, strengthening its role in advocacy and representation at the national level.

Today, DEBRA Greece is committed to:

• Supporting and empowering patients and caregivers through psychological and practical assistance

• Providing reliable information on EB and emerging therapeutic developments

• Connecting patients with specialized healthcare centers to improve access to care

• Fostering a strong community through shared experiences and mutual support

• Advocating for patients’ rights, including access to disability certification, social and financial support, and psychological care

• Promoting equitable and regulated access to treatments through national healthcare systems

• Improving access to essential materials, such as advanced wound dressings and specialized nutritional support

At the same time, the association actively collaborates with specialized healthcare professionals and centers applying modern therapeutic approaches, including stem cell therapies and approved gene therapies. A particularly important goal is the establishment of a Center of Expertise for EB in Greece, which is expected to significantly improve the coordination and quality of care nationwide.

Reconnecting with DEBRA International marks an important new chapter. Through this collaboration, DEBRA Greece aims to actively participate in international initiatives, exchange knowledge, and contribute to improving the quality of life for people living with EB.

For us, DEBRA Greece is more than an association. It is a community—a place where experience becomes strength, where people come together, and where support is transformed into action.

And this is just the beginning.