About Us

Our vision

A society with no prejudice and an improved quality of life for those who suffer from rare diseases.

Our mission

DEBRA, a group for epidermolysis bullosa patients, was founded with the goal of getting connected and organising help and support for those suffering from rare diseases and their families.
DEBRA's work is directed towards improving the health and social care systems, developing cooperative projects, and promoting and lobbying for the rights of those suffering from rare diseases. The organisation's work is based on humanity, social sensitivity, enthusiasm, equality, cooperation and innovation.

Our goals

To connect to each other and organise help for EB patients; to educate families as well as doctors; to improve socialisation for those who live with EB.

Our values

Humanity – we work to protect and promote the rights of one of the most vulnerable social groups and we pursue no self-interests.

Social sensitivity – we recognise the needs of others and respond to socially vulnerable groups.

Enthusiasm – led by dedication and motivation, we work on developing high quality medical care for those who suffer from rare diseases.

Equality – our work opens the way for those living with rare diseases to become equal members of society in all spheres of life.

Cooperation and innovation – we invest in cooperation and apply innovative approaches, which helps us progress towards our goals.

 

DECLARATION

DEBRA TEAM

TASKS