The EB World Congress in January 2020 will be the first global Congress on EB, bringing together the world’s leading experts in EB research, clinical management, and the EB Community. Sharing state-of-the-art knowledge across the key stakeholders will give guidance to the professionals involved and support the development of strategies for research, regulatory, funding, and healthcare.
This inaugural event is being organised and funded by DEBRA UK in partnership with Cure EB with support from its Sponsors and as part of an alliance of more than 20 rare disease and dermatology organisations worldwide. Working alongside Cure EB as a key partner in EB 2020 strengthens the collaboration between researchers, funding bodies, and relationships with biotechnology companies.
1. Tell us a bit about your company/organisation.
Cure EB (formerly Sohana Research Fund) was set up in 2011, by the parents of Sohana Collins, a young child with a severe form of the condition. When Sohana was born in 2002, there was very little prospect of an effective treatment let alone cure, but breakthroughs in research underpin the significant hope that this is no longer the case. Our aim has been to accelerate avenues of research towards and through clinical trials to to reach effective treatments. We do this by funding academic or industry based research individually or in collaboration with other funding organisations. Our focus is on targeting projects that have the groundwork established for reaching treatments and testing those theories.
2. What is your mission or goal as a company/organisation?
Our mission is in our name. We want ultimately to cure EB and hope to help deliver quality of life changing effective treatments to patients on the way to that ambitious goal.
3. How is your company/organisation involved with EB?
Our primary mission is EB research but as members of the EB community part of our work is aimed at raising awareness of EB and educating the public about what it means to have this devastating condition.
4. What are you looking forward to about EB 2020? Why did you decide to get involved?
The last EB research conference was in 2017. In the three years since the research landscape has changed radically with many clinical trials underway across the world and momentum towards treatment. It is wonderful to be partnering in the first EB world congress. We look forward to meeting our funding partners and researchers, hearing about new avenues of research and sharing information in a collaborative environment whose focus is treating EB in all its forms, either symptomatically or via life changing gene therapies.
5. What does the future of EB look like to your company/organisation?
We are excited to be funding an important gene therapy trial in France called EBgraft and have a very interesting pipeline of work coming through. We are optimistic about the future and really believe that #CureEB will be a reality someday!
For more information about Cure EB, please visit their website: https://www.cure-eb.org