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The importance of international EB research funding

The increase in clinical studies for EB and the accompanying progress in new therapeutic approaches for EB patients is the result of many decades of basic research to understand the biology of EB, followed bypreclinical research to test therapeutic concepts. Even now, however, the  mechanisms by which EB causesmultisystemic disease are not yet fully understood, but further research into the biology of the disease would be expected to lead to additional, and better, targets for therapies.

There are still many question marks, and as yet there is no cure. The 40 or so years of research efforts by various groups worldwide underpin the translation into clinical trials and hope for patients. For a long time, this basic research was financed exclusively through various DEBRA groups, with EB research projects funded by DEBRA UK since the 1980s. Just as important an achievement of this funding was the support of the early stage careers of researchers, many of whom are now the senior EB researchers leading large EB research and clinical groups around the world. DEBRA’s Medical and Scientific Advisory Panel (MSAP) was recruited from the expert EB research and clinical community in the 1990s to help prioritise DEBRA’s research funding to address unmet medical need, and to ensure research funded is of the highest scientific quality, providing value for money.

Since 2006, the role of MSAP, and the processes of peer-review and research funding contracts have been formalised further, with increasing attention to protection of DEBRA’s investments and future exploitation of successful research. Several research-active DEBRAs collaborating under the banner of ‚DEBRA International‘ (notably UK, Austria and Ireland, with smaller contributions from others such as Spain and France) have focused and coordinated research support. The first research funding round organised by DEBRA International took place in 2005, and since then, calls for research proposals have been held, usually twice each year, with MSAP meeting in either Vienna or London to review the best research proposals worldwide and to make their recommendations for funding. MSAP has also assisted DEBRA’s research staff in framing calls to address specific priority needs such as a call for clinical trials, and calls for research into chronic inflammation and fibrosis, or wound healing. EB Resnet has been supporting & facilitating these joint funding rounds since 2019.

Find out more about our MSAP members.

EB Resnet Report #1_2021

The newly publishe EB Resnet Annual Report 2021 provides statistics about the international funding rounds (2007-2021). Find out more.

Funding Possibilities 2022

This year's calls for proposals are open June-September 2022.


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