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.