The main goals of our group are:

• to connect those who live with EB and their families to each other
• to educate EB patients and their families as well as to be a source of information about everyday care and options for symptomatic treatment
• to improve the quality of life for those who live with EB through everyday care and occasional surgeries, since there is no causal treatment yet
• to help provide everyday care products and vitamin, mineral and energy supplements for achieving good nutrition, which can be hard for those with EB
• to train a team of experts for monitoring those who live with EB
• to provide help with getting a normal education
• to help with better socialisation of those who live with EB
• to organise treatment both at home and abroad
• to raise financial and material resources to run the charity and help those suffering from EB