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Paul Rübig, MEP
Norica Nicolai, MEP
Dr. Miroslav Mikolášik, MEP
Nessa Childers, MEP
Dr. Cristian-Silviu Bușoi, MEP
MEP Heinz Becker
Raia
Saskia
Laura
Jo
Kristine
Aislin
Amanda Bok

Calendars

NMO events

Events

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
European Inhibitor Summit
New Technologies in Haemophilia Workshop
Round Table on Switching from Standard Therapies: Where do Novel Therapies Fit In
2018 EHC Conference
Tenders and Procurement Workshop
Round Table on Women and Bleeding Disorders
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 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

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Amanda Bok

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Our 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.

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Paul Rübig

Paul Rübig (born 6 May 1953) 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 on 25 January 1996, at this time by decision of the Austrian Parliament. Since then, he was four times re-elected, 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, amongst others, the Foreign Affairs Committee, the Committee
for Security and Defense, Women’s Rights and Gender Equality Committee. This allowed her
to familiarise herself, not only with different political conflicts and situations, but also with
their impacts on people’s life. 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 is Member of the European Parliament since 2004. He is Member of the
Committee on the Environment, Public Health and Food Safety. He 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 and during that time,
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 July 2013. In May 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.
He is a member of the European People’s Party and is currently a member of the Committee
on Environment, Public Health & Food Safety Committee (ENVI). He was a member of
the Romanian Chamber of Deputies for Timiş County from 2004 - 2007, he was a Member of
the European Parliament from 2007 - 2013, and he re-joined the European Parliament in
2014.

Highly involved in health care topics, Dr. Buşoi has been a strong supporter of the European
Haemophilia Consortium, co-chairing the Mild and Moderate Haemophilia Round Table in
2015. 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. In addition, he is co-chair of the Parliamentary 'Intergroup on Ageing and Intergenerational Solidarity' and Vice President of the Parliamentary 'Interest Group on Carers.'
He is also 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

Raia Mihaylova joined the EHC team in January of 2017. She holds the position of Communications Officer and helps manage the organizations’ ongoing growth of activities and reach.

Previously, Raia has worked as a journalist for the Bulgarian National Darik Radio, as well as various other American and European publications. It is her passion for helping and strengthening communities that brought her to the EHC.

Raia was born in Bulgaria but grew up in the United States, speaking both languages fluently. She holds a Masters’ degree in Financial Journalism from City University of London, United Kingdom. Her Bachelor degree is in Journalism and Mass Communications, which was completed at the American University in Bulgaria.

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.