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30th Anniversary
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Declan Noone
Fiona
Jana Žitňanská, MEP
Paul Rübig, MEP
Norica Nicolai, MEP
Dr. Miroslav Mikolášik, MEP
Nessa Childers, MEP
Dr. Cristian-Silviu Bușoi, MEP
MEP Heinz Becker
Charles
Saskia
Laura
Jo
Kristine
Aislin
Amanda Bok

Calendars

NMO events

Events

Youth Leadership Workshop Alumni Event
World Haemophilia Day 2019
Conference on Women and Bleeding Disorders
Round Table on the Future of Comprehensive Care and Outcomes
Leadership Conference 2019
EHC Round Table of Stakeholders on Pain Management
Round Table of Stakeholders on Markets and Access
2019 EHC Conference
Inhibitor Summit 2019
Youth Leadership Workshop 2019
Workshop on Tenders and Procurement 2019
Workshop on New Technologies in Haemophilia Care 2019
EHC Workshop on New Technologies in Haemophilia Care
EHC Workshop on Tenders and Procurement
2018 EHC Inhibitor Summit
Round Table on Switching from Standard Therapies: Where do Novel Therapies Fit In?
ISTH Annual Scientific and Standardization Committee Meeting
2018 European Hematology Association Annual Congress
2018 World Federation of Hemophilia World Congress
European Conference on Rare Diseases and Orphan Products
EAHAD Annual Congress
New Technologies in Haemophilia Workshop
Round Table on Switching from Standard Therapies: Where do Novel Therapies Fit In
2018 EHC Conference
Round Table on Women and Bleeding Disorders
2018 EHC Leadership Conference
World Haemophilia Day 2018
Youth Leadership Workshop
Round Table on Economics and Access, Health Care Systems and Novel Therapies
ISTH 2017 Congress in Berlin, Germany www.isth2017.org
EHC Round Table of Stakeholders on 'Usage and Measurement of EHL and non-substitutional therapies'
EHC 2017 World Haemophilia Day Celebration
EHC Round Table of Stakeholders on Orthopaedic Aspects in Haemophilia Care
EHC Round Table of Stakeholders on Clinical Trials
EHC Workshop on New Technologies in Haemophilia Care
2017 European Inhibitor Network (EIN) Workshop
EHC Workshop on Tenders and Procurement
EHC Inhibitor Summit 2017
EHC Youth Leadership Workshop 2017
2017 EHC Conference
EHC Leadership Conference 2017
French NMO Information day on platelet disorders
French NMO organises information day on 'Women with bleeding disorders and family planning'
EHC holds first Inhibitor Summit
EHC 2016 World Haemophilia Day Celebration
EHC held 2016 Annual Conference
EHC 2nd Leadership Conference
EHC 2016 Workshop on New Technologies in Haemophilia Care
EHC 2016 Workshop on Tenders and Procurement
EHC Round Table on Personalised Outcome Measures
EHC Round Table on Hepatitis C
EHC Round Table on Ageing and Haemophilia
EHC Youth Leadership Workshop 2016
13th International Haemophilia Congress of Turkey
International Basketball Camp
New Technologies Workshop 2015
HTA and Economics Workshop 2015
EHC Round Table on Inhibitors
Round Table on Mild and Moderate Haemophilia
Round Table on Tenders and Procurement
Youth Workshop 2015
EHC Annual Conference 2015
New Technologies Workshop 2014
EHC Pilot Leadership Conference 2015
Round Table on Factor Concentrate-Related Inhibitor Risk in Haemophilia A
World Haemophilia Day 2015 Event
World Haemophilia Day 2014 Event
HTA and Economics Workshop 2014
Youth Leadership Workshop 2014
Round Table on National Haemophilia Councils: from concept to reality
Round Table on von Willebrand Factor and Disease: Current Clinical issues
Round Table on Rare Bleeding Disorders and Orphan Drugs
EHC Conference 2014 - Belfast, Northern Ireland, UK
EHC Conference 2013 - Bucharest, Romania
EHC Conference 2012 - Prague, Czech Republic

Documents

EHC Now! Compilation Newsletter Sep '18 - Jan '19
EHC Round Table on Switching from Standard Therapies: Where do Novel Therapies fit in?
EHC publishes its 2017 Annual Report
EHC Round Table on Women and Rare Bleeding Disorders
EHC Round Table on Economics and Access, Health Care Systems and Novel Therapies
EHC Round Table of Stakeholders on 'Usage and Measurement of EHL and non-substitutional therapies'
EHC Publishes Annual Report 2016
EHC Round Table on Orthopaedic Aspects in Haemophilia Care
Open letter to EC President Juncker
EHC Round Table on Clinical Trials in Haemophilia
EHC Round Table on Outcome Measures in Haemophilia
EHC publishes 2015 Annual Report
EHC publishes September 2016 Newsletter
Haemophilia Stories: Documentary and Short videos
EHC Round Table on 'HCV and Haemophilia'
Haemophilia Care in Europe - a survey of 35 countries (2012)
EHC Round Table on Inhibitors in Haemophilia A
EHC publishes December 2015 Newsletter
EHC publishes December 2015 Newsletter
Round Table on Mild and Moderate Haemophilia
EHC 2014 Annual Report
EHC Round Table on Tenders and Procurement: A European Survey of 38 Countries
EHC Position Statement on MSM and Blood Donation
Round Table on factor concentrate-related inhibitor risk in haemophilia A
Round Table on National Haemophilia Council
Round Table on von Willebrand Disease and Factor: Current Clinical Issues
Round Table on Rare Bleeding Disorders and Orphan Drugs
Annual Report 2013

Staff

Laura Savini
Jo Eerens
Amanda Bok

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Policy-Making, Advocacy, Awareness
Promote Access to Optimal Treatment and Comprehensive Care
Support and Empower National Member Organisations

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List of EHC events
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EHC Mission

The European Haemophilia Consortium (EHC) is a non-profit, non-government organisation that works to improve the quality of life for people with congenital bleeding disorders such as haemophilia, von Willebrand Disease (VWD) and other rare bleeding disorders in Europe.

Contact Us

EHC Office

Address - Rue de l'Industrie/ Nijverheidsstraat 10, BE-1000, Brussels

Phone: tel.: +32 2 893 24 70
E-mail: office@ehc.eu
Website: www.ehc.eu

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© European Haemophilia Consortium (EHC) 2019. All rights reserved.

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PARTNERS Project Consultant

Declan

Community Programmes Officer

Fiona joined EHC in 2017 and is currently one of the Community Programmes Officers, with her work focusing on youth related activities including training and workshops and the Youth Fellowship Programme. Fiona previously worked for the Irish Haemophilia Society for eight years. Fiona has a degree and Masters in Psychology from Trinity College Dublin and is currently completing her PhD in Psychotraumatology.

Jana Žitňanská

Ms. Jana Žitňanská is a Member of the European Parliament (MEP) and part of the European Conservatives and Reformists Group (ECR). She is the Vice-Chair of the Committee on Women’s Rights and Gender Equality and a Member of the Committee on Employment and Social Affairs. Her political career started in 2010 as a Member of the National Council of the Slovak Republic and was followed by being a Non-Attached Member of the National Council from 2012 until 2014. Ms. Žitňanská is a trained journalist and has a longstanding experience as an editor and news presenter in TV and radio before being the Head of Foreign News of TV Markiza from 2007 until 2009.

In the European Parliament, Ms. Žitňanská is the rapporteur for the European Parliament Own-Initiative report on Pathways for the reintegration of workers recovering from injury and illness into quality employment and shadow-rapporteur on the proposal for a Directive on the Work-Life Balance for Parents and Carers. She joined the European Parliament Rare Bleeding Disorders Group in 2018.

Paul Rübig

Paul Rübig is an Austrian politician and Member of the European Parliament (MEP) from Austria. He is a member of the Austrian People's Party, part of the European People's Party.

In 1991, Rübig was selected as a candidate for the Austrian People's Party for the regional elections in Upper Austria. After having been elected, he instantly became Chairman of the then so-called EU Integration Committee. By facilitating the accession of Austria to the European Union in this period, he quickly gained significant expertise in EU related matters.

After a very short period as MP, he became a Member of the European Parliament in 1996, at this time by decision of the Austrian Parliament. Since then, he has been re-elected four times, namely in 1996, 1999, 2004 and 2009.

Norica Nicolai

Norica Nicolai is the vice-chair of the ALDE Group in the European Parliament and one of the strongest liberal voices in Romania. She has been a member of the European Parliament since 2009 and has been active in, among else, the Foreign Affairs Committee, the Committee for Security and Defense, Women’s Rights and Gender Equality Committee.

In addition, at the start of her second mandate in 2014, she became a member of the Fisheries Committee in the European Parliament. She also decided to use her notoriety and energy to get involved in social causes, such as access to treatment and information for people with rare diseases. She became a promoter of more campaigns regarding the problems of infertility among European citizens and has been lobbying for their rights.

Mrs Nicolai started her political career as deputy-minister in the Ministry of Labour in Romania back in 1995 and she was in charge of, among other things, the domain of gender equality. In addition, from this position, she actively implemented the acquis communautaire in Romania, creating and implementing many laws regarding issues of women’s rights.

She was also a member of the Romanian Senate from 2000 to 2008, where she was part of the Judicial Committee and the Defense Committee, and held the position of Vice-president of the Senate for the duration of one year.
Lastly, Mrs. Nicolai holds a degree from the School of Law of the University in Bucharest.

Dr. Miroslav Mikolášik

Dr Miroslav Mikolášik has been a Member of the European Parliament since 2004. He is Member of the Committee on the Environment, Public Health and Food Safety.

Dr Mikolášik is a very strong supporter of the European Haemophilia Consortium, participating in several EHC Round Tables in the past (e.g. Round Table on Rare Bleeding Disorders and Orphan Drugs, 2014; World Haemophilia Day, 2016).

Dr. Mikolášik’s work in the European Parliament revolves around access to life-saving medicines in Europe and paediatric medicines.

Nessa Childers

Nessa Childers was elected to represent the Blackrock area on Dún Laoghaire / Rathdown County Council as a Green party councilor in 2004. During that time, she served as part of the Dublin Regional Authority. She resigned her council seat in August 2008 and joined the Labour Party.

In the following year, she was elected as a Member of the European Parliament for the Ireland East Constituency. She resigned from the party in 2013. In 2014 Nessa Childers was re-elected as an independent MEP and joined the Group of the Progressive Alliance of Socialists and Democrats as a non-party member.

Dr. Cristian-Silviu Bușoi

Dr. Cristian-Silviu Bușoi is a Romanian physician and Member of the European Parliament, part of the European People’s Party. He is also currently a member of the Committee on Environment, Public Health & Food Safety Committee (ENVI).

Highly involved in health care topics, Dr. Buşoi has been a strong supporter of the European Haemophilia Consortium (EHC), co-chairing various EHC Round Tables. He is also the co-chair of the informal interest group in the European Parliament on Patient Access to Healthcare and the Friends of the Liver Group.

Heinz K. Becker, MEP

Heinz K. Becker has been a member of the European Parliament since 2011 in representation of the Austrian party Österreichische Volkspartei. He is member of the Civil liberties, justice and home affairs Committee, the “Petitions” committee, as well as vice member of the “Employment and social affairs” committee.

MEP Becker is also co-chair of the Parliamentary 'Intergroup on Ageing and Intergenerational Solidarity' and Vice President of the Parliamentary 'Interest Group on Carers.' He is Vice President of the European Seniors’ Union (ESU), member of the disability intergroup of the European Parliament and member of the European Alzheimer's Alliance.

Before becoming an MEP, Heinz K. Becker worked for various international advertising agencies.

Communications Officer

Charles brings a wealth of experience from various agencies and organisations such as the University of Washington, the United Nations, the Dutch government/EU, Georgetown University and the US State Department - international assignments in the Netherlands, Bulgaria, the Czech Republic, Norway, Greece, Greenland, Denmark, Japan, Macedonia, the Republic of Georgia and Bosnia and Herzegovina; Masters, Project Management Certification. Charles speaks several languages including English (mother tongue), Norwegian, some Klingon and broken Elvish.

saskia

Saskia Pfeyffer joined the EHC in 2016 as the Office Assistant and deals with administrative and accounting tasks as well as supporting the smooth running of the office and its activities.

Prior to this, Saskia has worked for more than ten years in the field of women’s health and rights. She worked for the European Parliamentary Forum on Population and Development (EPF) and for Care international.

Saskia is Dutch and speaks English, French and Dutch and has a bachelor degree in European studies from the University of The Hague, the Netherlands.