Our staff manage our strategic pillars: Research; Therapy & Care; Healthcare Systems, Policy & Access; Capacity Building; Communications and Outreach.
SMA Europe also has a small secretariat, responsible for the day-to-day management of the organisation. It is managed by our Operations Manager, who is supported by our Admin and IT Support employee.
Vanessa has been with SMA Europe since January 2011. She manages the research programme, our communications and contributes to other initiatives.
Vanessa was brought up in France and Belgium where she attended the European School of Brussels. After coming to the UK to read Experimental Psychology and later Immunology, she became a research scientist, working for 8 years in the field of immunology, initially at The Royal Postgraduate Medical School (Hammersmith Hospital) and Imperial College London. Vanessa also worked for The SMA Trust for 7 years and subsequently for the merged national SMA organisation, SMA UK, where she still works today.
Evgeniya joined SMA Europe in September 2021 as a researcher. Currently, she is working on a pan-European survey and on the SMA Daily Life Study. Originally from Russia, she studied Psychology in France and the US and subsequent completion of a research master’s degree in Belgium (KU Leuven) and gaining experience of conducting cross-cultural studies in the Netherlands (University of Amsterdam).
Raquel joined SMA Europe in September 2021 and is based in Barcelona. She oversees the operations and daily activities of SMA Europe, to ensure sustainability and adequate organisational processes.
Raquel has over 12 years of experience coordinating programmes and projects at rare disease patient organisations, at national level and European level. Prior to SMA Europe, Raquel worked at EURORDIS-Rare Diseases Europe, where she led European capacity building programmes and social projects. While at EURORDIS, she also managed the first secretariat of the European Network for Resource Centres for Rare Diseases. Before that, Raquel coordinated the Portuguese Help Line for rare diseases, after having worked with development projects in Europe and in India.
Raquel holds a Bachelor of Arts in Communication as well as a post graduate degree in Project Management. A Portuguese national, she is also fluent in English, French and Spanish.
Carolina has been providing administrative support to SMA Europe since September 2019.
Carolina is an Argentinian Lawyer by training, specialised in family law. She moved to Madrid with her family in 2017.
Laura did an apprenticeship as a pharmaceutical technician, followed by Bachelor´s and Master´s degrees in health economics at the University of Bayreuth. After graduating, she worked there as a research and teaching assistant, at the Chair of Health Care Management and Health Services Research (priorities: rare diseases, cost of illness analyses, quality of life measurement, pharmacoeconomics, health economic methodology). In this position, she led her own research project for several years in cooperation with colleagues of the Friedrich-Baur-Institute of the Ludwig Maximilian’s University Munich. She wrote her dissertation on her quantitative analysis of the caregiver burden of caring relatives of patients suffering from one of the rare neuromuscular diseases Duchenne muscular dystrophy, Becker Kiener muscular dystrophy or spinal muscular atrophy.
She joined SMA Europe in August 2021 as Manager of the OdySMA project.
Laura lives in Bayreuth, Germany.