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EHC News

Home > Archive for EHC News

EURORDIS launches new edition of its project “Support to European Federations”

Read more February 12, 2019 at 10:19 am Charles Kinney

EHC publishes new issue of periodic review on advances in haemophilia treatment

Read more February 5, 2019 at 2:14 pm EHC

EHC Now! Compilation Newsletter Sep ’18 – Jan ’19

The EHC Now! Compilation Newsletter gathering all EHC Now! articles from September 2018 to January 2019 is now out! In this edition, you will also find contributions from our Round Table sponsors. We hope...

Read more January 31, 2019 at 4:35 pm EHC

Roche joins the EHC PARTNERS programme

Today Roche becomes the third company to join the European Haemophilia Consortium’s (EHC) innovative programme: Procurement of Affordable Replacement Therapies – Network of European Stakeholders (PARTNERS). This programme aims to improve access to medicines...

Read more October 5, 2018 at 1:00 pm EHC

Medscape Offers Haemophilia Gene Therapy Education for Health Care Providers

After many years, gene therapy in patients with haemophilia has started to show promising results in alleviating symptoms and improving the disease phenotype. Medscape has launched a new education program for providers seeking to...

Read more July 30, 2018 at 12:40 pm EHC

EHC and EAHAD release joint statement on novel non-replacement therapies

Read more July 11, 2018 at 11:01 am EHC

Registration for the 2018 EHC Inhibitor Summit is now open

After the great success of the two previous Inhibitor Summits organised by the European Haemophilia Consortium (EHC), we are delighted to announce the third annual EHC Inhibitor Summit that will take place in Barretstown,...

Read more July 5, 2018 at 1:44 pm EHC

Call for EHC Youth Committee 2018-2020 Candidates

The EHC is currently looking for three youth candidates and an advisor to sit on its Youth Committee for the next three years (2018-2020) to support the development of the EHC Youth Leadership Workshop and other...

Read more May 3, 2018 at 4:07 pm EHC

European Principles of Inhibitor Management have been published

In spite of recent major advances in the understanding and treatment of inhibitor development in patients with haemophilia, multidisciplinary management of many of these patients remains suboptimal and highly heterogenous across Europe. Following a...

Read more April 27, 2018 at 4:42 pm EHC

Haemophilia Care in Europe 2018 Survey

Dear NMOs, Every three years since 2009, the EHC has carried out ‘Haemophilia Care in Europe’ surveys in order to determine the level of haemophilia treatment and care in countries across Europe, as well...

Read more April 26, 2018 at 4:34 pm EHC
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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.

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Phone: tel.: +32 2 893 24 70
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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.
saskiaSaskia 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.
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.
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.