• Help people with EB

    Your support of DEBRA International or a national EB group enables us to provide the best quality of life for families and individuals affected by EB.

Donation Account: IBAN AT65 6000 0005 1004 5254, BIC BAWAATWW, DEBRA International, Am Heumarkt 27/1, 1030 Vienna

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Clinical care research

At present there is no cure, and no treatment that makes a significant difference to patients with any form of EB. Treatment is limited to chronic wound care and pain control. As skin is inherently fragile and non-healing, even advanced products and treatments developed to date for other chronic wound conditions do not work for EB skin.

Advances in regenerative medicine means that, for the first time, it will be possible to create improved treatments, and eventually cures, for all types of EB.

Care costs for severe EB are around €50,000 annually; very severe cases can be €50,000 per month. The current need for expensive supportive care (e.g. wound care, nutritional, dental, ophthalmology, plastic surgery) would be greatly reduced by successful stem-cell or other cure therapy.

Until such time as treatments are routinely available which make a major difference to skin strength, reduction in blistering, and all the other consequences of chronic wounds, DEBRA International continues to fund research into clinical care and better ways of managing EB.

Such research targets symptom-relief – control of physical pain and its psychosocial consequences, better bandaging to deal with the problems of chronic wounds and prevent the numbers and extent of blisters, as well as ways of improving nutrition and mobility, for example.

Much of the research is led, and carried out by teams of clinicians and DEBRA's expert EB nurses, who have routine contact with EB patients and their families.

Some current priorities for clinical-care research

  • Pain relief
  • Psychosocial development
  • Wound care