DEBRA Research
Mission & Vision
Mission
Our mission is to identify and advance the most promising approaches to alleviate symptoms and cure EB, and to promote, fund and manage projects to develop effective therapies for EB. We bring together the worldās best minds from academia, industry, regulatory bodies and patient support to achieve our goals.
In all our activities, we are guided by the idea of maximizing the benefits for EB patients.
Vision
Our vision is a world where EB is cureable.
The long-term goal is to find cures for all forms of this rare and serious group of diseases. Until safe and effective cures are routinely available, we will also seek to support and develop R&D programs to create therapies that offer clinically relevant improvements. Thus, our goal is to provide the best possible quality of life for all EB patients, in the near-term and in the future.
What is EB?
Epidermolysis Bullosa (EB) is the name for a group of painful genetic skin conditions that cause the skin to become very fragile and tear or blister at the slightest touch. Sores also occur on mucous membranes, in the mouth, eyes, esophagus and gastrointestinal tract, and the function of internal organs may be affected (e.g. heart, kidneys). There are many different subtypes of EB, all classified under four main types according to the depth within the skin at which blistering occurs. Some subtypes are relatively mild but nevertheless cause pain and limit activity, and may be limited to just part of the body, e.g. the hands and feet are affected,, to the most severe, which can have a devastating effect on any part of the body causing lifelong disability and pain. In severe forms of EB, life expectancy is shortened, and in some cases, fatal in infancy. Living with EB is a great challenge for those affected and their relatives.
Recommended links for more details on the different EB subtypes:
