3rd CONFERENCE ON · Prof. Aurelijus Veryga - Professor of the Lithuanian University of Health...
Transcript of 3rd CONFERENCE ON · Prof. Aurelijus Veryga - Professor of the Lithuanian University of Health...
9–10 MARCH 2017,
VILNIUS
SPEAKERS AND CHAIRS’ BIOGRAPHIES
3rd CONFERENCE ON
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TABLE OF CONTENTS:
Jean-Claude Juncker – President of the European Commission ............................................................ 2
Vytenis Andriukaitis – Commissioner on Health & Food Safety ............................................................ 2
Aurelijus Veryga - Minister of Health Lithuania ..................................................................................... 3
Christopher Fearne – Minister of Health Malta ..................................................................................... 3
Françoise Grossetête – Member of the European Parliament and former rapporteur of the Directive
of Cross-border Healthcare ..................................................................................................................... 4
Xavier Prats Monné – Director General of DG SANTE ........................................................................... 5
Andrzej Rys – Director, Healthsystems, medical products and innovation DG SANTE .......................... 5
Alberto Pereira – Coordinator of Endo-ERN........................................................................................... 6
Tapani Piha - Head of Unit, Cross-Border Healthcare and eHealth Unit DG SANTE .............................. 6
Maurizio Scarpa - Coordinator MetabERN ............................................................................................. 7
Despina Spanou – Director, Digital Society, Trust and Cybersecurity DC CNECT ................................... 7
John F. Ryan – Director, Public Health, country knowledge, crisis management DG SANTE ................. 8
Victoria Hedley – RD Joint Action coordination ..................................................................................... 9
Ana Rath– RD Joint Action coordination ................................................................................................ 9
Paolo Casali – JA coordinator and ERN EUROCAN representative ....................................................... 10
Simona Martin – Policy Officer, Health in Society, JRC ........................................................................ 10
Iiro Eerola – Policy Officer, Innovative and Personalised Medicine DG RTD ........................................ 11
Justina Januševičienė – Member of the ERN Board, Ministry of Health of Lithuania ......................... 11
Yann Le Cam – Eurodis Chef Executive Officer ..................................................................................... 11
Jean-Yves Blay – Coordinator ERN EURACAN ...................................................................................... 12
Nora Gamst – ERN Board of MS, Norway’s representative.................................................................. 12
Paul Boom – ERN Board of MS, Netherland’s representative .............................................................. 13
Miriam Dalmas – ERN Board of MS, Maltese representative .............................................................. 13
Arimantas Tamasauskas – Member of ERN Neuro .............................................................................. 14
Christopher R. Chapple – Coordinator of the eUROGEN network proposal ........................................ 14
Rebecca Tvedt – Patient representative in ERN BOND ........................................................................ 15
Avril Daly – Patient representative in ERN-EYE .................................................................................... 15
Till Voigtlander – Chair of the ERN Board of Member States, Austria’s representative ...................... 16
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Jean-Claude Juncker – President of the European Commission
Luxembourgish nationality. President of the European Commission 2014-present.
President of the Euro Group 2004-2013.
Prime Minister of Luxembourg 1995-2013.
Prime Minister, Minister of State, Minister for the Treasury July
2009–2013.
Prime Minister, Minister of State and Minister for Finance 1999–
2009.
Prime Minister, Minister of State, Minister for Finance, Minister
for Labour and Employment 1995–1999.
Minister for Finance and Minister for Labour 1994–1995.
Minister for Finance, Minister for Labour 1989–1994.
Minister for Labour, Minister Delegate for the Budget 1984–1989.
State Secretary for Labour and Social Security 1982 – 1984.
Joined the CSV party 1974.
https://ec.europa.eu/commission/commissioners/sites/cwt/files/cv_juncker_0.pdf
Vytenis Andriukaitis – Commissioner on Health & Food Safety
Vytenis Andriukaitis was appointed the European
Commissioner for Health and Food Safety in 2014. His
core responsibilities include building the knowledge base
of national health systems to shape national and EU
policies, and helping to address the challenges of national
health services at a time of intensive pressure on public
finances. Before his appointment to the European
Commission, for six terms Commissioner Andriukaitis
served as a Member of Parliament in Lithuania, and was
one of the co-founders of the Lithuanian Social Democratic Party. He was also a co-author
and a signatory of the Independence Act of Lithuania on 11 March 1990. From 2012-2014
Andriukaitis was a Minister for Health in the Lithuanian Government, and in 2014 was a
vice-president of the World Health Assembly. The Commissioner is also a trained surgeon,
specialising in cardiovascular surgery.
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Aurelijus Veryga - Minister of Health Lithuania
Prof. Aurelijus Veryga - Professor of the Lithuanian
University of Health Sciences and a doctor psychiatrist with
more than 10 years of professional experience in addiction
treatment. Initiator and one of the establishers of two
successfully acting national NGO’s: Kaunas Drug Abuse
Help Centre for Youth and Lithuanian National Tobacco
and Alcohol Control Coalition. In 2005 became a member
of the National Health Council and was responsible for
tobacco, alcohol, drugs control and prevention. In 2008
was a freelance expert of the Committee on Health Affairs
of the Parliament of the Republic of Lithuania. During 2009-2012 served as a public
adviser on the prevention of tobacco, alcohol and drugs for the Prime Minister of the
Republic of Lithuania. During 2011-2016 was the Head of the Health Research Institute
(WHO Collaborating centre) under the Faculty of Public Health of the Lithuanian
University of Health Sciences. Prof. Aurelijus Veryga serves as the Minister of Health of
the Republic of Lithuania from 13th December 2016.
Christopher Fearne – Minister of Health Malta
Hon. Christopher Fearne was born in Attard, Malta on
12 March 1963. In April 2016 he was appointed
Minister for Health after holding the position of
Parliamentary Secretary for Health since April 2014.
Prior to this, Hon. Fearne worked as a Consultant
Paediatric Surgeon and Clinical Chairman at Mater Dei
Hospital. He is a Member of Parliament for the ruling
Labour Party and was the Chairman of the Foreign and
European Affairs Committee at the Maltese House of
Representatives. Hon. Fearne has worked as a doctor
and surgeon for over 29 years. He received his formal education at St. Aloysius College
and at the University of Malta graduating in Medicine and Surgery in 1987, becoming a
Fellow of The Royal College of Surgeons of Edinburgh. He worked and studied in a
number of children’s hospitals in England, including the Great Ormond Street Hospital in
London. He also lectures students of medicine at the University of Malta. Hon. Fearne
is married to Astrid. They have 3 children, Dawn, Julian and Rafael.
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Françoise Grossetête – Member of the European Parliament and former rapporteur of
the Directive of Cross-border Healthcare
A law graduate, Françoise Grossetête started her career in
France as a local politician in her hometown of Saint-
Etienne, before being elected as Member of the European
Parliament for the first time in 1994. Since then, she has
been constantly re-elected, the last time in 2014. A member
of Les Républicains (LR) and the European People Party
(EPP), she is sitting in the committee for the environment,
public health and food safety, and the committee for
energy, industry and research. She is also Vice-President of
the EPP Group in Parliament since 2014. During her
mandates, she specialised in health policy and has been working closely on the
pharmaceutical regulation, as a Parliament's rapporteur, among other texts, of the
Regulation for orphan medicinal products and of the Directive for cross border health-
care.
Brian Hayes, Member of the European Parliament
Born in 1969. He studied history and sociology at the National
University of Ireland, St Patricks College Maynooth and also at
Trinity College Dublin. Prior to his election to the Irish
Parliament, he worked as the National Youth & Education
Officer to Fine Gael. He was also delegation secretary to Fine
Gael during the Peace & Reconciliation Forum.
He served as a Member of the Irish Parliament from 1997-
2002 and 2007-2014 and was Leader of the Opposition in the
Senate from 2002-2007. In 2011, he was appointed Minister of
State at the Departments of Finance and Public Expenditure & Reform, a position he held
until his election to the European Parliament.
During this time, he attended Eurogroup, ECOFIN and Budgetary Council meetings on
behalf of the Irish Government. As Irish Minister of State, he was responsible for
procurement reform, public sector reform, the Office of Public Works and developing
flood alleviation projects in Ireland.
MEP since 2014, he is the leader of the European Advocates for Epilepsy group in the EU
Parliament and has recently been elected Deputy spokesperson for the European People’s
Party (EPP) in the European Parliament on Economic Affairs.
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Xavier Prats Monné – Director General of DG SANTE
Xavier Prats Monné is the Director-General for Health and Food Safety of the European
Commission since September 2015. He is responsible for EU policies and programmes in
health and food safety, including the promotion of public
health, the assessment of national healthcare systems'
performance, pharmaceutical legislation, animal health and
welfare, as well as the strengthening of Europe's capacity to
deal with crisis situations in human health and the food
sector. He previously served as Director-General for
education and culture and as Director for employment
policy. He holds degrees in Social Anthropology from the
Universidad Complutense (Madrid, Spain); in Development
Cooperation from the International Centre for Advanced
Mediterranean Agronomic Studies (CIHEAM; Paris, France);
and in European Studies from the College of Europe
(Bruges, Belgium), where he graduated first of the Class of 1981-82 and served as
assistant professor. He is from Spain and fluent in Spanish, English, French, Italian and
Catalan.
Andrzej Rys – Director, Healthsystems, medical products and innovation DG SANTE
Director responsible for health systems, medical products and innovation at the Directorate-General for Health and Food Safety, European Commission.
Member of IMI Governing Board and Alternate Member of the
European Medicines Agency (EMA) Board. Medical doctor
specialized in radiology and public health, graduate of Jagiellonian
University, Krakow (Poland). Previous and other positions:
2011: Director for Health Systems and Products in the
Directorate-General for Health and Food Safety, European
Commission.
2006: Director for Public Health and Risk Assessment in the Directorate-General for Health
and Consumers, European Commission.
2003: Founder and Director of the Center for Innovation and Technology Transfer at
Jagiellonian University (Krakow, Poland).
1999-2002: Deputy Minister of Health in Poland. Member of the Polish accession
negotiators team.
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1997-1999: Director of Krakow’s city health department.
1991-1997: Founder and Director of the School of Public Health at the Jagiellonian
University.
Alberto Pereira – Coordinator of Endo-ERN
Alberto M. Pereira (23/11/1966) is coordinator of Endo-
ERN, professor of medicine, and chair of Endocrinology at
Leiden University Medical Center, the Netherlands. In
addition, he founded and chairs the Leiden Center for
Endocrine Tumors, a multi-disciplinary, and patient-
centered expert center for research, education and patient
care with a high quality profile and a strong scientific
orientation. He is president of the European
NeuroEndocrine Association (2016-2018), and leads the
National Pituitary Network in the Netherlands. This
network, together with the pituitary patient society,
developed the first shared-care document on quality of care criteria for patients with
pituitary disease (2017). His research focusses on the long-term consequences of pituitary
disease and it treatment, and in specific on the concept of long-lasting, or even irreversible
effects of stress hormones on the central nervous system.
Tapani Piha - Head of Unit, Cross-Border Healthcare and eHealth Unit DG SANTE
Tapani Piha works as Head of Unit for Cross-Border
Healthcare & eHealth in the European Commission. In
addition to the implementation of the Directive on
Patients’ rights in cross-border health care, the Unit is
setting up the European Reference Network of
specialised clinical centres and creating a cross-border
mechanism for ePrescription. It also deals with data
management and protection in healthcare, as well as
health workforce issues. Having worked since 2001 in
the Commission, he has been responsible for policy on
Health Technology Assessment (HTA), health strategy, health information, expert advice for
health systems, health law, health research coordination, and - managed human resources
in DG Health and Consumers.
Before joining the Commission, he carried out epidemiological and intervention research on
health behaviours and cardiovascular disease. He held positions at the Finnish Ministry of
Health, and coordinated Finland's EU policies in health in 1995-2001. At the WHO Regional
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Office for Europe in 1989-94 he was responsible for the Action Plan for a Tobacco-free
Europe.
Maurizio Scarpa - Coordinator MetabERN
Maurizio Scarpa, MD PhD, paediatrician, is the Director of
the Centre for Rare Diseases at the Helios Dr Horst
Schmidt Kliniken GmbH in Wiesbaden, Germany. He is
Professor of Paediatrics at the Dept. for the Woman and
Child Health, University of Padova, Italy and Founder and
President of the Brains for Brain Foundation, a Pan-
European task force on brain and neurodegenerative
diseases, formed by representatives of 60 Universities and
15 Biotech Companies.
Prof. Scarpa earned his medical degree and doctorate and
completed his residency in Paediatrics at the University of
Padova in Italy. He completed a postdoctoral fellowship in
molecular biology and gene expression at the European Molecular Biology Laboratory
(EMBL) in Heidelberg, Germany, and in genetics and gene therapy at the Howard Hughes
Medical Institute, Institute for Molecular Genetics, at Baylor College of Medicine in Houston,
Texas, USA.
He has been the Director of the PhD Course on Genetics and Biochemistry at the Dept. for
the Woman and Child Health at the University of Padova, Italy.
He served as vice-Dean for the International Affairs at the University of Padova and Director
of the International Affairs Office at the Faculty of Medicine of the University of Padova,
Italy. He is the Coordinator of the European DGSANTE Project, INNERMED.
Prof. Scarpa has extensive expertise as a basic scientist in genetics and biotechnology, as
well as a clinician in the diagnosis and treatment of paediatric rare metabolic disorders,
neurometabolic diseases in particular. He is especially interested in developing innovative
health approaches for the diagnosis and the treatment of metabolic inherited diseases, to
this aim he is also collaborating with the major Biotech Companies as external independent
expert. Prof. Scarpa´s teaching and educational interests aim, among other, at the
development of a MD/PhD European Program on Inherited Metabolic Diseases. Prof. Scarpa
is author of about 140 international peer reviewed clinical and scientific papers, book
chapters and reviews. Prof. Scarpa is the Coordinator of the Potential ERN for Inherited
Metabolic Diseases, MetabERN, formed by 69HCPs in 18 EU countries, taking care of 43000
patients, involving about 1700 professional and collaborating with 47 Patient Organizations.
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Despina Spanou – Director, Digital Society, Trust and Cybersecurity DC CNECT
Despina Spanou is the Director for Consumers
at the Directorate-General for Justice and
Consumers.
She heads a department of six Units in charge
of consumer law and policy including consumer
markets, redress and enforcement, as well as
consumers’ safety. Previously she served as
Principal Adviser the Directorate-General for
Health and Consumers and was responsible for
reshaping the DG’s communication department and policy, but also overseeing two self-
regulation bodies as chair of the Alcohol and Health Forum as well as the Platform for
action on Diet, Physical Activity and Health. She also represented the health and consumer
portfolio as Sherpa at the High Level Forum for a Better Functioning Food Supply Chain.
She was previously the Deputy Head of Cabinet for the European Commissioners for Health
Mr. Kyprianou (2004-2008) and Mrs. Vassiliou (2008-2010). During her time at the Cabinet
of Health and Consumers, she coordinated food chain issues, including the EU response to
the avian flu crisis in 2006, and EU food trade relations with Russia. She also advised on
public health policy files, including the first EU action against cancer.
Despina Spanou started her career at the European Commission's Directorate General for
Competition after having practised European competition law with the Brussels branch of a
US law firm. She is a qualified lawyer and holds a Ph.D in European law from the University
of Cambridge.
https://ec.europa.eu/digital-single-market/en/despina-spanou-director-consumers-dg-justice-and-consumers
John F. Ryan – Director, Public Health, country knowledge, crisis management DG SANTE
John F. Ryan is Director of the Commission Public Health, country
knowledge, crisis management directorate since September
2016. Previously, in the same department, he was the Head of
Unit responsible for health threats, health information, the
cancer programme, the pollution related disease programme,
the drugs prevention programme, the health monitoring
programme, the health promotion programme, the rare diseases
programme and the injury prevention programme. Most
recently, he led the unit responsible for health determinants and
inequalities. He was a Commission representative on the Board
of the EU Lisbon Drugs Agency, and is currently the Commission
representative on the Board of the European Centre for Disease
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Prevention and Control. He also had the charge of dealing with tobacco control issues
including product regulation directives, tobacco advertising, and the WHO international
treaty negotiations for a tobacco convention. He has previously worked in other European
Commission departments dealing with the completion of the internal market, and on
international trade negotiations. He is also an official of the Irish civil service (on leave).
Victoria Hedley – RD Joint Action coordination
Victoria Hedley is a rare disease policy expert with experience and
understanding of a wide range of topics across the rare disease
‘spectrum’. As Thematic Coordinator for the Joint Action for Rare
Diseases, RD-Action (2015-2018), she is responsible for setting the
strategic goals for the Policy & Integration work-stream, and
delivering workshops, reports and recommendations across a broad
range of topics. Having previously project-managed the EUCERD
Joint Action (2012-2015), Victoria has contributed to the
development of EUCERD and CEGRD (Commission Expert Group on
Rare Diseases) Recommendations around topics such as Cross-Border Genetic Testing for
Rare Diseases; the Incorporation of Rare Diseases into Social Services and Policies; Patient
Registration and data collection; National Plans and Strategies; and, most prominently,
European Reference Networks. Victoria leads the Joint Action support for the
conceptualisation and implementation of ERNs, and is now overseeing RD-ACTION policy
activities designed to assist the Networks in addressing shared challenges via common
guidance and tools. Victoria also leads the Newcastle team generating the new online
resource for the State of the Art of Rare Diseases Activities in Europe and Chairs the RD-
ACTION ‘Task-Force on Interoperable data-sharing within the framework of the operation of
ERNs’, an internal RD & eHealth collaboration.
Ana Rath– RD Joint Action coordination
Dr Ana Rath is a medical doctor with a a background in general surgery
and a Masters degree in Philosophy. She oriented her career to medical
information and terminologies in 1997 and joined Orphanet
(www.orpha.net) in 2005. At Orphanet she was successively in charge of
the encyclopedia of rare diseases and the rare disease database, before
becoming the Scientific Director of Orphanet. She became Deputy
Director of Orphanet in 2011 and Director of Orphanet in May 2014. Ana
Rath is Coordinator of RD-ACTION (the European Joint Action on Rare
Diseases 2015-2018), Coordinator of HIPBI-RD (Harmonizing information on phenomics for a better
interoperability in the rare diseases field), Member of the Revision Steering Committee of the WHO's
International Classification of Diseases (ICD11), and Scientific coordinator of Support-IRDiRC
(Scientific secretariat of the International Rare Diseases Research Consortium). She chairs the
Orphanet Rare Disease Ontology (ORDO: http://bioportal.bioontology.org/ontologies/ORDO).
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Paolo Casali – JA coordinator and ERN EUROCAN representative
Paolo Giovanni Casali, Associate Professor of Medical Oncology at
the University of Milan, is Director of the Medical Oncology Unit 2
at the Istituto Nazionale Tumori, Milan, Italy, where he also serves
as Secretary of the Ethics Committee.
In the area of rare cancers, he coordinates the Joint Action on Rare
Cancers (JARC). He coordinates the Steering committee of Rare
Cancers Europe. He founded and coordinates the Italian Rare
Cancer Network.
His clinical and research activities focus on sarcomas, mainly adult soft tissue sarcomas and
gastrointestinal stromal tumors (GIST). He is Secretary of the Italian Sarcoma Group and a
member of the Soft Tissue & Bone Sarcoma Group of the European Organisation for
Research and Treatment of Cancer (EORTC). He is a founder and coEditor-in-chief of Clinical
Sarcoma Research, and a member of the ESMO Sarcoma Faculty.
He is a member of the Executive Board of the European Society for Medical Oncology
(ESMO), as Chair of the Public Policy Steering Committee and the EU Policy Committee. He is
member of Board of Directors of the Connective Tissue Oncology Society (CTOS).
He is (co)author of more than 220 papers in peer-reviewed medical journals.
Simona Martin – Policy Officer, Health in Society, JRC
Simona Martin is a medical doctor specialist in hematology. She
obtained her PhD in the field of stem cell transplantation for patients
with hematological malignancies at the University of Heidelberg,
Germany and worked at the Clinics for Hematology-Oncology of the
Universities of Heidelberg and Duesseldorf, in clinical patient care and
basic research. She joined the European Commission's Joint Research
Centre (JRC) in the frame of a research project on targeted therapies
for cancer patients. Now she is scientific officer responsible for rare
diseases at the JRC's Directorate F - Health, Consumers and Reference Materials, Unit F.1 –
Health in Society.
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Iiro Eerola – Policy Officer, Innovative and Personalised Medicine DG RTD
Dr. Iiro Eerola is a Scientific Project Officer in the European
Commission, DG Research and Innovation, Directorate for Health in
the Unit for Innovative and Personalised Medicine. He joined the
Commission in 2004 and has been working on Rare Diseases since
February 2012. He holds M.D. and Ph.D. from the University of
Turku, Finland. He has done also an MBA at the United Business
Institutes, in Brussels, Belgium. Before joining the Commission he
has worked in the Academy of Finland, in the Christian Duve
Institute of Cellular Pathology & Université Catholique de Louvain,
Brussels, Belgium and at the University of Turku, Finland.
Justina Januševičienė – Member of the ERN Board, Ministry of Health of Lithuania
Justina Januševičienė is currently holding a position of the director
of Health care resources and innovation management department
at the Ministry of Health of the Republic of Lithuania. She is
responsible for healthcare workforce, developing and deploying
e.health system and health ICT as well as fostering health
innovations, through management tools, research and
development. Justina Januševičienė, who is a speaker of numerous
national and international healthcare conferences and public
events, is involved in scientific legal researches of interaction
between law and modern technologies in healthcare and life
sciences. Justina Januševičienė is also a member of the Study
Committee of Bioinformatics at Vilnius University, member of Research Council of the State
Research Institute Centre for Innovative Medicine and the chairman of the executive council
of National E. Health system.
Yann Le Cam – Eurodis Chef Executive Officer
Yann Le Cam is the Chief Executive Officer of EURORDIS – Rare
Diseases Europe – since 2001 and was one of its founders in
1997.
Yann is a member of the European Medicines Agency (EMA)
Management Board since 2016. He was also a member of the
EMA Committee for Orphan Medicinal Products (COMP) as a
patient representative, where he served for 9 years and was its
Vice-Chairman for 6 years for the two first COMP mandates.
Yann was as well the Vice-Chairman, representing the patients, at the EU Committee of
Experts on Rare Diseases (EUCERD) for 3 years (2010-2013), and was nominated again
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together with other 7 patient representatives on the Commission Expert Group on Rare
Diseases (2013-2016).
He was former-chair of the Therapeutic Scientific Committee of the International
Consortium for Research on Rare Diseases (IRDiRC) for 3 years.
Yann is a regular member of EU High Level Groups, Panels or Working Groups, Programme
Committees of Conferences or Workshops, leads several EU funded projects.
Holding an MBA and an Executive MBA from HEC, Yann lives between France and Belgium
and has three daughters, the eldest of whom is living with cystic fibrosis.
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 740 rare disease
patient organisations from 65 countries that work together to improve the lives of the 30
million people living with a rare disease in Europe. By connecting patients, families and
patient groups, as well as by bringing together all stakeholders and mobilising the rare
disease community, EURORDIS strengthens the patient voice and shapes research, policies
and patient services.
Jean-Yves Blay – Coordinator ERN EURACAN
Prof JY Blay, MD, PhD is Professor of Medical Oncology at the
University Claude Bernard Lyon I, Medical Oncologist, and
current Director General of the Comprehensive Cancer Center of
Lyon, the Centre Léon Bérard (centreleonberard.com) , President
of the French Sarcoma Group and of the NETwork for expert
centers in SARcomas (netsarc.org), Director of the Integrated Site
for Innovative Research in Oncology in Lyon (SIRIC, Cancer-
LYRic.com), Past-President of the European Organization of
Research and treatment of Cancer (eortc.org), corresponding
member of the French Academy of Medicine.
Nora Gamst – ERN Board of MS, Norway’s representative
Nora Gamst is an adviser at the Norwegian Ministry of Health
and Care Services working in the Department for Specialist
Health Care Services. She has a M.Phil. degree in Health
Economics, Policy and Management from the University in Oslo.
As of 2013 she has been working at the policy level with the
national system for the governance of the Norwegian national
experts units, which was established by the Norwegian Ministry
of Health and Care Services in 2011. In Norway, national expert
units cover a variety of highly specialized treatments, as well as
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rare diseases. In reference to European Reference Networks, she has been participating in
the establishment of the ERN system from 2013, as member of the expert group established
by the European commission regarding the development of the legislation for the ERN, and
later representing Norway in the Board of Member States for the ERN. In addition, she
works at the ministerial level with the Norwegian system for introduction of new health
technologies in the specialist health care services.
Paul Boom – ERN Board of MS, Netherland’s representative
Dr. Paul Boom (Haarlem, 1956) works at the Ministry of Health,
Welfare and Sport in The Netherlands in a dual capacity as senior
policy officer for rare diseases and as chief dental officer. He acts as
the Netherlands Representative within the Board of Member States
on Rare Diseases and is a member of the Commission Expertgroup
on Rare Diseases. In his other role Paul represents his country
within the Council of European Chief Dental Officers having served
as its president in the period 2010-2011. Paul holds both a master
in Dentistry (University of Amsterdam) and Business Administration
(Erasmus University Rotterdam).
Miriam Dalmas – ERN Board of MS, Maltese representative
Miriam Dalmas is a medical doctor specialising in Public Health
Medicine. She holds Master degrees in Public Health and
Business Administration (MBA) from the University of Malta.
Presently her main role is in the coordination of policy
development within the Department of Policy in Health in the
Ministry for Health. She is also the lead location trainer in
policy development and international public health in the
medical specialist training programme for public health
medicine. Dr Dalmas occupied the post of Director for Policy
Development, EU and International Affairs for the Ministry for
Health from 2007-2011. She is the main author of the National Cancer Plan for the Maltese
Islands 2011-2015 and the National Health Systems Strategy 2014-2020. Presently, she is
coordinating the compilation of a new National Cancer Plan. She represents Malta on the
Commission Expert Group on Cancer Control and on the Board of Member States for
European Reference Networks. She also represented Malta on the Joint Actions EPAAC and
CANCON and in the past she also represented her country on the Commission Expert Group
on Rare Diseases.
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Arimantas Tamasauskas – Member of ERN EURACAN
Arimantas Tamasauskas graduated Kaunas Medical Institute in
1986 and became a member of staff in Neurosurgery
Department of Kaunas University of Medicine and junior
researcher of Institute for Biomedical Research. Part of the
residency training completed in Royal Adelaide University
Hospital (Australia). In 1993 maintained the doctoral thesis on
cerebral aneurysms and vasospasm, and was awarded „Sugita“
grant for research and clinical work in Neurosurgery
Department of Nagoya University (Japan). Skull base surgery
methods were learned working as Neurosurgery fellow in
Marseile University. In 2003 he completed the Habilitation procedure and became Professor
of Neurosurgery in Kaunas University of Medicine. Since 2004 he was elected as a Chairman
of the Department of Neurosurgery in Kaunas University of Health Sciences and since 2010
became Director of Neuroscience Institute. He prepared more than 150 scientific
publications and each year performs up to 200 major neurosurgical operations. The main
fields of interest are Skull base surgery, neurooncology and cerebrovascular surgery.
Professor Arimantas Tamasauskas is a Chairman of Lithuanian Society of skull base
surgeons, Member of executive board of European skull base society, member of JRAAC
(Joint Residency and Advisory Accreditation Committee) and UEMS section of Neurosurgery,
member of International board of journal „Neurosurgery“. Representative of ERN Board of
Member States (Lithuania).
Christopher R. Chapple – Coordinator of the eUROGEN network proposal
Christopher Chapple is a Consultant Urological Surgeon at
Sheffield Teaching Hospitals, Honorary Professor at
University of Sheffield and Visiting Professor at Sheffield
Hallam University. He has a particular interest in
functional reconstruction of the lower urinary tract and
the underlying pharmacological control mechanisms, and
provides a tertiary service in lower urinary tract
reconstructive surgery. He trained at the Middlesex
Hospital where he completed his doctorate thesis. He
continued there and the Institute of Urology in London
for his sub-specialist training. He is Secretary General of the European Association of
Urology, having previously been Chairman of the International Relations Committee,
Adjunct Secretary General Responsible for Education, and Director of the European School
of Urology. He was editor-in-chief of the journal Neurourology and Urodynamics from
2006-2016 and is on the editorial board of several international journals. He is an active
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member of many urological associations and societies including the British Association of
Urological Surgeons, the European Association of Urology, the International Continence
Society, the Association of Academic European Urologists and the American Association of
Genitourinary Surgeons. He has chaired a number of guidelines initiatives including the
NICE Guidelines Development Group on male LUTS and was co-chairman of the ICUD
consultation on male LUTS. BAUS awarded him the St Peter’s medal 2011 and SUFU
awarded him the Lifetime Achievement Award in 2015. Prof. Chapple has co-authored 700+
articles, comments and letters in peer-reviewed journals and has written several chapters
and books.
Rebecca Tvedt – Patient representative in ERN BOND
Rebecca Tvedt Skarberg (41) lives in Oslo, Norway. Her
interest for rare disorders started out with her own
personal experience being born with osteogenesis
imperfecta. She was born in the US and spent her
childhood in different countries, and different health
systems. She has studied psychology and has a degree in
social work. She worked for many years in the
Norwegian Welfare and Employment office with people
from a walks of life from refugees to addiction. She has
always been involved in organizations for people with
disabilities were she has had many roles and tasks. I 2014 she started working for the
Norwegian Advisory Unit on Rare Disorders. In 2016 she was elected as Epag representative
of the ERN for rare bone disorders (BOND). Her main focus has always been independence,
patient advocacy and user-participation. Her rare bone disorder has provided her with
challenges, but also with unique possibilities to meet others, learn about healthcare and
what good quality of life really means.
Avril Daly – Patient representative in ERN-EYE
Avril Daly is the CEO of Retina International the global patient-
led umbrella group dedicated to the promotion of research into
Rare and Inherited as well as Age-related forms of retinal
degenerative conditions. She previously held the position of
CEO at Fighting Blindness Ireland for eight years.
Avril is the Vice President of EURORDIS (Rare Disease Europe)
and chairperson of the), the Irish National Alliance for Rare
Diseases. In 2011 Avril was appointed by the minister for health
to the steering committee working towards the publication of
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the Irish National Plan for Rare Diseases, (2014) and now sits on its oversight committee
and represents the patient voice on the working group of the Clinical Programme for Rare
Diseases at the Irish Health Service Executive (HSE). Avril was previously co-chair of the
National Vision Coalition in Ireland.
Avril was a founding board member of the Medical Research Charities Group (MRCG) and,
the Irish Platform for Patients' Organisations, Science and Industry (IPPOSI).
Avril studied communications, journalism and business and previously worked in media
relation. She lives with the rare retinal condition Retinitis Pigmentosa.
Till Voigtländer – Chair of the ERN Board of Member States, Austria’s representative
Till Voigtländer is associate professor of neurobiology and
neurosciences at the Institute of Neurology, Medical University
of Vienna. After studying medicine in Heidelberg, Germany, he
received his professional training in molecular biology,
neuropathology, neurochemistry and neuroimmunology at
different universities and institutions in Heidelberg, Berlin,
Zurich, and Vienna. Since his board certification as specialist in
neurobiology in 2006, he leads a specialised clinical laboratory
focussing on the diagnosis of selected rare neurometabolic,
neuroimmunological and neurodegenerative diseases. Besides
his diagnostic responsibilities, he is actively involved in recent developments in the area of
rare diseases on a national, as well as European level. In Austria, Dr. Voigtländer is country
coordinator of Orphanet since 2004 and medical and strategic head of the National
Coordination Centre for Rare Diseases at the Austrian Healthcare Institute since 2011. He
was one of the key participants in the elaboration of the national plan of action for rare
diseases and is currently actively involved in its implementation. At the European level, Dr.
Voigtländer was part of several former European expert groups and committees and is
currently the official representative of the Austrian Ministry of Health in the Board of
Member States on ERN that he is co-chairing together with the European Commission.