“Paving the Way for a Competitive and Dynamic EU Knowledge Economy: the Way Forward in Rare Diseases”. Rare Neurometabolic Pediatric Diseases: a joint effort is needed for a competitive and dynamic EU knowledge economy.
Brussels, 26 November 2013 – The Roundtable, spearheaded by the Brains for Brain international research foundation and hosted by MEP Amalia Sartori, Chairwoman of the Parliament’s Industry, Research and Energy (ITRE) Committee and MEP Maria Graça da Carvalho (ITRE Committee), was held in the European Parliament in Brussels (Belgium). The meeting rallied numerous relevant stakeholders to discuss initiatives aiming to create a model of intersectoral cooperation that could facilitate the set-up of a European PhD Programme in the area of rare neurometabolic paediatric diseases (RPNMDs). In line with the core principles established by “Towards a Maastricht for Research” (The Maastricht for Research Manifesto, published by MEP Amalia Sartori and MEP Luigi Berlinguer in June 2013), the Brains for Brain Foundation has in fact created a network of Universities and Scientific Societies to start a doctorate programme aimed at furthering the knowledge on neurometabolic diseases amongst young physicians and scientists in order to establish an European Network of specialized experts and maintain excellence in Europe. Such initiative intends to enhance an advance awareness and knowledge about RPNMDs via cross-border collaboration and to enable better diagnosis and management of patients affected by these diseases.
All participants were highly motivated and overall there was a strong sense of collaboration and of excitement. The outcome of the workshop was very encouraging and positive. It was generally agreed that overcoming barriers in health research and reversing the brain drain should be made political priorities at European level. This will require action from policy makers, hospital administrators, healthcare providers, patient groups and citizens across Europe. During the meeting researchers, clinicians, patient advocacy groups, and many other interested stakeholders from 20 European organisations active in the field of health have signed the B4B Manifesto to maximise investments in health research and advance care for children with rare neurometabolic diseases. B4B Roundtable represents a major step toward the establishment of a successful EU cross border collaboration and cooperation to raise awareness about RPNMDs and keep them on the health-care agenda. Although individually rare by definition, RPNMDs collectively affect millions of people worldwide. Joint forces to tackling rare diseases are essential to ensure that children affected by RPNMDs are given the priority they deserve and that they needs are met.
© European Union 2013 – EP, http://audiovisual.europarl.europa.eu