New EB patient organisation in Bulgaria

EB Debra Bulgaria is a natural path forward of parents dedicated to providing their child with the best possible life – a story of pure love. What began as a personal challenge has turned into a mission – a mission to provide all new therapies and information to the families in Bulgaria, and across the world, for everything related to EB.

EB Debra Bulgaria was founded in 2023 during the process of getting the first ever approved therapy - Filsuvez, available for the patients in Bulgaria.  At the time, there was no patient organization.

Filsuvez is available and fully reimbursable for patients up to 18 years of age since September 2023.

We are the engine for providing strength, hope, advocacy, rare therapies, information on EB and the care and support for the families and patients. There’s so much going on for EB at the moment and we are going to fight for each and every step on the way.

Our core strength is turning the wheel and making the impossible possible! We unite and ensure collaboration among all related stakeholders  – national parties, the private sector, the medical care.  Their alignment is a key factor to success. Our aim is to achieve great results, thus we manage to provide available treatments, organize patients for clinical trials, knowledge sharing particular to EB care among specialists and involve the business as a main part of the chain.

We do not accept No as an answer. If it is available somewhere around the globe, then we will go ahead and make it available locally as well!