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The BUR-EB Project

Burden of EB 

A new research project - BUR-EB - will assess the socio-economic burden of EB in seven EU countries (Spain, France, Germany, Italy, Hungary, Bulgaria and Austria), within the European Joint Programme for Rare Diseases (EJP RD) initiative.

The study will analyse the following aspects:

  • economic burden (costs for healthcare and informal care, financial burden on families and loss of productivity);
  • impact on quality of life, family burden and subjective well-being.

An anonymous survey has just been launched, in collaboration with clinicians and the local patient organisations DEBRA.

Get involved! If you are EB patient or family member in one of the participating countries, you can join the study via the link below.

Join the study


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