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Investors in Research

Investors in Research

The Investors in Research network is a group of key DEBRA supporters with a particular interest in research. They have come together as a “network” in order to support the various DEBRA research programmes through significant donations from £5,000 to transformational donations of £50,000 plus.

There are several specific research programme options as well as an overarching fundraising initiative, under the direct patronage of HRH The Countess of Wessex, known as the Hour Glass Appeal: so called to convey the sense of urgency with which parents of severely affected children, and young adults with EB, view the need for effective treatments to reduce the effects of EB on their quality of living NOW.

Why now?

Advances in our understanding of gene, cell, and protein therapies is reflected in the growing number of applications for funding. It is always a huge challenge for DEBRA’s International Medical and Advisory Panel (MSAP) and DEBRA’s Board of Trustees to make the decision as to which applications can be funded, given budgetary constraints, and which must wait.

This is why the enthusiasm and drive of the Investors in Research network will play such an important role in our search for the ultimate goal: The safest and most effective treatments for every type of EB. A cure.

How does the network…work?

The Investors in Research will be invited to meet researchers and families, attend conferences and participate in private and exclusive gatherings. Opportunities to hear about the latest research funding opportunities are made available for each donor to consider and all members receive regular updates on the work their support is funding.

How will the network grow?

The network will grow both internally and externally. Invitations to join us at small gatherings and events will be sent out by DEBRA to anyone who expresses an interest in supporting EB research, and existing Investors in Research are able to invite their own guests to come along and hear more in a relaxed and enjoyable atmosphere.

If you are interested in learning more about DEBRA’s research portfolio please contact to arrange an informal coffee.

Josh's story

Josh's story

"We are so thankful for the money DEBRA is investing in research and hope one day for a treatment that will make Josh’s life less painful.”