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The 2016 EURORDIS Awards at the EURORDIS Awards was awarded to outstanding contributors towards rare diseases on Rare Disease Day 2016 (29 February). The awards winners were:
Policy Maker Award
Cristian-Silviu Buoi, Member of the European Parliament, Romania
Cristian-Silviu Buoi, Member of the European Parliament since 2007, has consistently demonstrated a strong vision of patient centric, quality and accessible medical systems across Europe in this position. A physician by training and a former lecturer in Public Health and Health Management at the Victor Babes University of Medicine and Pharmacy, Buoi has translated his expertise into concrete parliamentary action at the European Level.
Volunteer Award
Tsveta Schyns-Liharska, Belgium/Bulgaria
As a parent of a daughter affected with the rare disease alternating hemiplegia, Tsveta has dedicated a considerable amount of time to caring for her daughter and to volunteering for the rare disease community. Tsveta’s volunteer activities include being a patient representative on the Paediatric Committee (PDCO) of the European Medicines Agency since 2008 and for 8 years dedicating a massive amount of time and work as Scientific Coordinator of the European Register for Multiple Sclerosis Project. A true achievement has been the founding and running, as Secretary General, of ENRAH and the work Tsveta has done for the EU Public Health Programme.
Media Award
France Télévisions - AFM-Téléthon, France
The EURORDIS Media Award recognises the long-standing support, for the past 30 years, of France Télévisions in broadcasting live the French Telethon organized in partnership with the AFM-Téléthon. Millions of people have taken part and donated to the AFM-Téléthon cause and thanks to this it has been possible to support research and create the Institute of Biotherapies for Rare Diseases, with laboratories such as the Myology Institute, Généthon, I-Stem et Atlantic Gene Therapies, all leaders in research and development of biotherapies for rare genetic diseases.
Patient Organisation Award
UNIQUE - The Rare Chromosome Disorder Support Group, UK
UNIQUE has been a source of mutual support and self-help to families of children with a rare chromosome disorder since it was founded by Edna Knight MBE in the UK in 1984 as the Trisomy 9 Support Group. Starting with 1192 families, to now representing over 14,000 families world-wide in over 90 countries.
Scientific Award
Prof. Dr. Peter N. Robinson, Institute for Medical Genetics, Universitätsklinikum Charité, Germany
Professor Peter N. Robinson is a Professor for Medical Genomics at the Charité Universitätsmedizin Berlin in Germany, as well as Research Group leader at the Institute of Medical Genetics and Human Genetics of the Charité – Universitätsmedizin Berlin. Amongst other activities, Peter has developed the Human Phenotype Ontology (HPO), as well as a number of algorithms for disease gene prediction and next-generation sequencing data. Peter’s team’s output in recent years has included the development of a novel treatment strategy for Marfan syndrome in mice.
European Rare Disease Leadership Award
Joint winners: Antoni Montserrat Moliner, Jarek Waligóra and Michael Hübel, Directorate
EURORDIS decided to jointly present the European Leadership Award 2016 to three key pioneers from the Directorate General of Health and Food Safety (DG-SANTE) within the European Commission.
Antoni Montserrat Moliner’s role was pivotal in the development and adoption of the Commission Communication in 2008 and the Council Recommendation on Rare Diseases in 2009, which shaped the European Union rare disease policy landscape. Montserrat has championed patient engagement, particularly in his involvement in EUROPLAN and National Plans.
Jarek Waligóra has tirelessly brought his medical expertise to his position of Policy Officer for rare diseases at the European Commission (EC). Waligóra specifically worked on the EC report on the implementation of the Council Recommendation on Rare Diseases, and has been pioneering in setting the policy agenda for the first and the current Rare Disease Joint Actions.
Michael Hübel, Head of the Unit of Programme Management and Diseases at DG-SANTE within the European Commission, has demonstrated strong and visionary leadership within this role. He has been instrumental in initiating and supporting policies around rare diseases, notably in the establishment of the Commission Expert Group on Rare Diseases and the Commission Expert Group on Cancer Control.
Company Award
Actelion Pharmaceuticals Ltd., Switzerland
Established in 1997, Actelion focuses on the discovery, development and commercialization of innovative drugs for diseases with significant unmet medical needs. The Company has, in particular, made a difference for pulmonary arterial hypertension (PAH) in Europe and globally. Actelion’s pipeline reflects continued commitment to address unmet medical needs, including PAH as well as other rare disorders. Actelion has engaged with and supported patient organisations since its founding. This has especially helped raise awareness and understanding of PAH, including the importance of psycho-social support in disease management.
Lifetime Achievement Award
Renza Barbon Galuppi, Italy
In the past 10 years, as President of UNIAMO, Renza has contributed to stressing the importance for patients with Rare Diseases to share their experiences within associations and promote their integration into the community in every facet of life. In particular, she has advocated for patient representatives to be part of the expertise and decision making process, and has committed to the social innovation project, ’Ristoro Fantasia’, overcoming mental and social barriers within young patients affected by rare diseases.
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