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EURORDIS Black Pearl Awards 2021

Scientific Award recognises EB scientist Prof. Alain Hovnanian

The EURORDIS Black Pearl Award is one of the most important awards in the field of rare diseases. Just as the emergence of a black pearl is extremely rare, the EURORDIS Black Pearl Award winners are also very unique. The award winners' commitment is of very high importance in improving the lives of those affected by a rare disease.

This year, Prof. Alain Hovnanian received the Black Pearl Scientific Award  in recognition of his scientific excellence and the comprehensive scope of his work. His outstanding commitment has a positive impact on all research in rare diseases and on the patient community. His research and work in the field of rare skin diseases have proven to be groundbreaking, especially in Epidermolysis Bullosa and Pachyonychia Congenita, both in France and internationally. We are very pleased and congratulate him warmly on this award.

It clearly shows how strong and exemplary EB research is in the field of rare diseases. Besides Prof. Alain Hovnanian, Prof. Michele de Luca from Italy has already been awarded this prize. In 2020, the EB House Austria was pleased to receive a Black Pearl Award as the world's first special clinic for "butterfly children" in the category "Holistic Care".

Prof. Alain Hovnanian’s work on EB

Prof. Alain Hovnanian focuses on understanding the molecular mechanisms underlying Epidermolysis Bullosa (EB) as a basis for the development of new gene and cell therapies. Based at the Imagine Institute in Paris, located at the heart of the Necker Paediatric Hospital, Prof Alain Hovnanian coordinates GENEGRAFT, a PhaseI/II ex vivo gene therapy trial for recessive dystrophic EB based on the transplantation of autologous skin equivalents genetically corrected with a self-inactivating retroviral vector encoding type VII collagen. This first in man clinical trial will be essential to assess the safety, efficacy and potential of the approach.

See project details on an EB-ResNet-funded project of Prof. Alain Hovnanian.

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