Charity information

Cure EB

Cure EB exists to fund research and clinical trials that aim to lead to effective treatments and ultimately a cure for Epidermolysis Bullosa

Founded 2011

  • Mission statement

    Our mission is to find effective treatments for and eventually to cure EB (epidermolysis bullosa)
    This is a genetic skin condition that leads to blistering and skin loss at the slightest friction. It is "Hard to say. Hell to live with" and children and adults with the condition live in constant pain associated with the burn like wounds that occur. The intense pain and repeated damage leads to progressive disability and severe forms are life shortening due to a particularly aggressive skin cancer that develops in early adulthood. The charity funds medical research focussing on gene modifying and gene corrective strategies aimed at translation into effective treatments and eventually a cure.

  • Aims

    Cure EB aims to:

    • AIM 1. To fund preclinical research with the the potential to lead to treatments for Epidermolysis Bullosa and all its associated complications such as corneal abrasions and skin cancer
    • AIM 2. To fund clinical trials to establish the value of a treatment in patients and from there move forward to delivering treatments to those suffering with EB on a large scale.
    • AIM 3. To build capacity within hospitals to deliver treatment options for people with EB, for example this may be to provide a bio-reactor for making cells to deliver to EB patients
    • AIM 4. Raise awareness of EB in print media, social media and TV and engage the public with the cause as well as disseminating research information through research update meetings and family days.
  • Overview

    Established: January 2011

    Registered Charity Number: 1158672

    Board members: 6

    Part time staff: 1

    Volunteers: 16

    Phone number: 02034058433

    Address: 10 Huntingdon Street N1 1BU

    View charity accounts on the Charity Commission website
  • Skin equivalent grafts for epidermolysis bullosa

    This is a clinical trial which aims at using gene corrected grafts to treat chronic wounds... More