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EHC News

Home > Archive for EHC News

Important Changes To 2018 EHC Conference: New Location; New Website

In 2016, our General Assembly voted to hold the 2018 EHC Conference in Baku, Azerbaijan, in partnership with our Azeri National Member Organisation (NMO). While we are delighted to continue partnering with our Azeri...

Read more March 1, 2018 at 6:14 pm EHC

Kedrion Biopharma and Sobi sign on to EHC PARTNERS programme working towards sustainable haemophilia treatment and care in Europe

Press Release Brussels – December 22nd 2017 Kedrion Biopharma, an Italian plasma-derived haemophilia treatment manufacturer, and Swedish Orphan Biovitrum AB (Sobi™), supplier of extended half-life (EHL) haemophilia treatment products, signed a Memorandum of Understanding...

Read more January 9, 2018 at 11:54 am EHC

Ground-breaking EHC programme set to increase access to haemophilia treatment in up to 14 countries

As part of its continued efforts to improve the quality of life of people living with rare bleeding disorders in Europe, the European Haemophilia Consortium (EHC) officially launched the Procurement of Affordable Replacement Therapies...

Read more November 29, 2017 at 3:57 pm EHC

Call for volunteers to join the EHC Inhibitor Working Group

As the two-year term of the first Inhibitor Working Group (IWG) is coming to an end, the EHC has launched a call for volunteers to join the team! The IWG coordinates the activities of...

Read more November 2, 2017 at 2:48 pm EHC

Inhibitor Stories: Documentary on living with haemophilia and inhibitors

The EHC is proud to announce the release of Inhibitor Stories, a documentary that captures the realities of life that people with haemophilia and inhibitors in Europe face day-to-day. Differences in access to treatment means very...

Read more October 30, 2017 at 12:27 pm EHC

EHC launches survey on women with bleeding disorders in Europe

The European Haemophilia Consortium (EHC) has launched a survey to learn more about women with bleeding disorders and carriers in Europe. The survey, open until 5 November, aims to identify women with bleeding disorders...

Read more October 16, 2017 at 10:43 am EHC

Call for volunteers to join the EHC Women and Bleeding Disorders Committee

The European Haemophilia Consortium (EHC) has launched a call for volunteers to join its newly established Committee for Women and Bleeding Disorders. The EHC Women and Bleeding Disorders Committee has been established to create...

Read more October 16, 2017 at 10:13 am EHC

Alnylam issues report on fatal thrombotic event in study of fitusiran

We are saddened to inform that Alnylam Pharmaceuticals has reported a fatal thrombotic event in a patient with haemophilia A without inhibitors in the Phase 2 open-label extension (OLE) study of fitusiran. Fitusiran is an...

Read more September 7, 2017 at 6:38 pm EHC

EHC is Looking for a Superhero

 

Read more September 6, 2017 at 4:37 pm EHC

EHC Haemophilia Care in Europe : A Survey of 37 Countries Published in Haemophilia Journal

Every three years since 2009, the European Haemophilia Consortium (EHC) has conducted surveys amongst its 45 national haemophilia member organisations to determine the extent to which the European Principles of Haemophilia Care and the...

Read more July 11, 2017 at 2:31 pm EHC
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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.
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.