The Voice of Rare Disease
Patients in Europe
EURORDIS Awards 2016 – winners announced!
The EURORDIS Awards 2016 were presented this week at a ceremony in Brussels. The Awards recognise outstanding patient advocates and organisations, volunteers, scientists, companies, media and policy makers who have contributed to reducing the impact of rare diseases on people's lives.
Yann Le Cam, Chief Executive Officer, EURORDIS, commented, "The winners of the EURORDIS Awards show exceptional commitment to supporting people affected by, or people that are living with someone affected by, a rare disease. It is an important opportunity every year to take stock and recognise the hard work of the various individuals and organisations that help reduce the impact of rare diseases, and encourage others to do the same."
A video of the awards ceremony will soon be available to watch on the EURORDIS events channel ofEURORDIS TV. Photos of the award winners are available here.
Below gives a shortened summary of each award winner. For full descriptions please see the full press release.
Cristian-Silviu Buşoi, 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. As a member of the ENVI Committee (on the Environment, Public Health and Food Safety) within the European Parliament, he has used this platform to champion patients' rights in each country. Buşoi has also advocated strongly for rare disease clinical trials, supporting a multi-centre collaboration at EU level to encourage partnerships between all rare disease stakeholders.
As a parent of a daughter affected with the rare disease alternating hemiplegia, Tsveta Schyns-Liharska 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 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.
The EURORDIS Media Award recognises the long-standing support of France Télévisions in broadcasting live the French Telethon for the past 30 years, organised in partnership with the AFM-Téléthon.
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.
Scientific Award - Prof. Dr. Peter N. Robinson, Institute for Medical Genetics, Universitätsklinikum Charité, Germany
Peter N. Robinson is a Professor for Medical Genomics at the Charité Universitätsmedizin Berlin, as well as Research Group leader at the Institute of Medical Genetics and Human Genetics. Amongst other activities, Peter has developed the Human Phenotype Ontology (HPO). HPO became a standard in describing human phenotypes, so contributing to make data interoperable and able to be shared for a better knowledge and recognition of rare diseases
European Rare Disease Leadership Award - Joint winners: Antoni Montserrat Moliner, Jarek Waligóra and Michael Hübel, Directorate General of Health and Food Safety (DG-SANTE) within the European Commission
The European Rare Disease Leadership Award 2016 goes to three key pioneers from DG-Sante:
Antoni Montserrat Moliner became the main Policy Officer on Cancer and Rare Diseases at the European Commission almost a decade ago. He has been pivotal in the development and adoption of the Commission Communication in 2008 and the Council Recommendation on Rare Diseases in 2009.
A clinical genetic paediatrician by training, Jarek Waligóra has tirelessly brought his medical expertise to his position of Policy Officer for Rare Diseases at the European Commission. His background has shone through in his understanding of the format and issues that are important to all rare disease stakeholders.
Michael Hübel, Head of the Unit of Programme Management and Diseases at DG-SANTE, 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.
Actelion focuses on 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. An Emerald member of the EURORDIS Round Table of Companies, Actelion has supported several key EURORDIS initiatives.
Renza Barbon Galluppi is believed to be a "wonder woman" for her ability and strength to be where she is needed at the right moment. It all started with the diagnosis of a typical type of hyperphenylalaninemia given to two of her three children. The delay in the delivery of the diagnosis to her eldest daughter and its consequences led her first to start the collaboration with the Patient Organisation involved in metabolic diseases but shortly after with UNIAMO, the Italian Federation of Rare Diseases.
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.
Eva Bearryman, Junior Communications Manager, EURORDIS