Sohana Research Fund

Sohana Research Fund

Charity information

Sohana Research Fund

The Sohana Research Fund exists to fund promising research projects and clinical trials that aim to lead to effective treatments and ultimately a cure for Recessive Dystrophic Epidermolysis Bullosa ("RDEB") and other forms for EB. Our primary activities are funding research anywhere in the world for developing and discovering treatments and for delivering treatments to patients. We raise EB awareness and disperse research updates and information via social media, media and public meetings.

Founded 2011

  • Mission statement

    Our mission is to find a treatment for and to cure EB.
    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 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 malignant skin cancer that develops in early adulthood. There is now real hope of treatments and even a cure for RDEB and the Sohana Research Fund aims to help translate positive findings rapidly to the clinic. SRF is primarily investing in cell and gene therapy research and have just funded a world first gene therapy trial in adults. We are aiming to progress a gene therapy trial in children, pre clinical gene editing projects that we aim to take to trial and delivering an interim stem cell treatment. To this end we are purchasing equipment for Kings College, London. We are establishing relationships with the biotech industry and NHS commissioning services in this country. We are collaborating with two US based EB research funding organisations on two big projects that we aim to follow to clinical trials. We hold a family day for EB families to get together and learn of research progress in a family friendly environment and hold evening scientific update meetings yearly

  • Aims

    Sohana Research Fund 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: 5

    Volunteers: 16

    Phone number: 02076070611

    Address: 10 Huntingdon Street N1 1BU

    View charity accounts on the Charity Commission website
  • Delivering cells for treatment of children with EB

    Epidermolysis Bullosa is a very painful genetic skin condition that causes blistering and ... More