What We Do?

Whilst the core of our work focuses on the well being of patients and their families, we also endeavour to establish strong relationships with national Debra groups across the globe. Through our collective worldwide effort, we engage and collaborate with our member groups on international projects across EB research, an EB patient registry and DEBRA and EB-related events.

Our Goals

  • Spread awareness about Epidermolysis Bullosa amongst health professionals and the general public.
  • Improve the quality of life of patients living with EB.
  • Provide medical and social services, such as social and emotional support to those affected by EB.
  • Establish and strengthen networks with professionals involved with EB care and research.
  • Provide resources, support and funding for EB patients and their families.
  • Educate and inform the broader public about Epidermolysis Bullosa (EB)