How ENROL Supports Clinical Research

Speakers: Béatrice Gulbis, Maria Piggin

Prof. Béatrice Gulbis is a physician specialized in Clinical Biology and a PhD at the Université Libre de Bruxelles. She has developed a reference laboratory centre for the diagnosis, prevention and follow-up of patients with hereditary red blood cells disorders and in particular, haemoglobinopathies and membrane red blood cells disorders. She is responsible of the neonatal screening programme in Brussels Region and has been working for its extension at the national level. She has joined the academic hospital Erasme in Brussels, Belgium and since 2015 the academic laboratory hospital in Brussels (LHUB-ULB). She has contributed to the implementation of a national network of health professionals on non-oncological red blood cells disorders through the Belgian Hematology Society and is working for more than 10 years for a European network on rare anaemias (ENERCA), and since March 2017 is the co-coordinator of the ERN-EuroBloodNet. Her experience has also been based on grants for research projects in Africa i.e., Burkina Faso and Democratic Republic of Congo.

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Maria Piggin is a PNH patient who founded PNH Support in 2015. Maria is a European Patients' Academy of Therapeutic Innovation's (EUPATI) Fellow, a EuroBloodNet ePAG and chairs the PNH Global Alliance. Maria also works for the NIHR Imperial Patient Experience Research Centre within the School of Public Health at Imperial College, London supporting publicly funded researchers to involve patients and the public in their research.