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 patients living with EB, in the near-term and in the future.
What is Epidermolysis Bullosa?
Epidermolysis Bullosa (EB) refers to a group of rare, inherited skin disorders that make the skin extremely fragile. Even minor friction or contact can cause painful blisters and wounds. In many cases, blistering also affects mucous membranes, including the mouth, eyes, esophagus, and gastrointestinal tract, and internal organs such as the heart or kidneys may be involved.
EB comprises numerous subtypes, which are broadly classified into four main categories based on the layer of skin where blistering occurs. The severity of the disease varies widely: some forms are relatively mild but still painful and may limit daily activities, often affecting areas such as the hands and feet. Other forms are severe and can affect the entire body, leading to chronic wounds, significant disability, and persistent pain.
In the most severe cases, EB can shorten life expectancy and may even be fatal in early childhood. Living with EB poses profound physical and emotional challengesānot only for those affected but also for their families and caregivers.
Recommended links for more details on the different EB subtypes:
