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Text Content

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 *  English
 *  Russian
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MENUMENU
 * ABOUT US
   * Mission and Objectives
   * Membership
   * Governance
     * Steering Committee
     * Medical Advisory Group
     * Medical and Scientific Advisory Group
     * Committees
       * New Product Review Committee
       * Women and Bleeding Disorders Committee
       * Von Willebrand Disease Committee
       * ERIN Committee
       * Youth Working Group
     * Our Team
   * Partners
   * Finance and Transparency
   * Data Privacy Policy
   * Work with EHC
 * BLEEDING DISORDERS
   * Ongoing Trials
   * About Bleeding Disorders
   * Haemophilia
   * von Willebrand Disease
   * Extremely Rare Bleeding Disorders
   * Platelet Disorders
   * Women with Bleeding Disorders
   * Inhibitors
   * Comprehensive Care
     * European Physiotherapists Network
   * Treatment Options
   * Useful Information
 * OUR WORK
   * Support and Empower National Member Organisations
   * Think Tank
   * Promote access to Treatment and Care
   * Policy-making, Advocacy and Awareness
   * Data Collection and Analysis
 * PROJECTS
   * European Rare and Inhibitor Network
     * ERIN Manifesto
   * European Von Willebrand Platform
   * Grants
   * Youth Fellowship Programme
 * EVENTS
   * Conferences
     * 6-8/10 EHC 2023 Conference
   * Workshops
     * 25-27/01 Youth Alumni Event
     * 21-23/04 Youth Leadership Workshop
   * Virtual Community Building
     * Community Call 24/01
   * World Haemophilia Week 2023
   * 2023 Calendar of Events
     * 25-27/01 Youth Alumni Event
     * 21-23/04 Youth Leadership Workshop
     * 15-18/06 EHC Leadership Conference
     * 6-8/10 EHC 2023 Conference
 * NEWS
   * EHC Newsletter
   * EHC News
 * LIBRARY
   * Novel Treatment Products Newsletter
   * Public Policy Review
   * Principles of Care
   * Armed conflict in Ukraine
     * For our NMOs
   * Annual Surveys
     * Haemophilia Care in Europe: 2009-2018
     * Mapping the needs of ageing bleeding disorder patients
   * Wildbad Kreuth IV consensus recommendations
   * Annual Reports
   * Multimedia
     * EHCucate
     * EHConversations
       * Gene Therapy Series
       * Living with hepatitis C and haemophilia in Europe
       * Women and Bleeding Disorders
     * Stories
     * EHC Exhibition
     * Podcasts
   * Resources
     * Gene Therapy Education
     * Resources for people with Von Willebrand Disease
     * Resources for people with mild bleeding disorders
     * Resources for people with rare bleeding disorders
     * Resources for women and bleeding disorders
     * Resources for people with inhibitors
     * National Contact Points for Cross-Border Healthcare
     * Report an adverse event to your national competent authority
 * CONTACT
   * Sign-up to our mailing list

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EHC_HAEMOPHILIA

@EHC_Haemophilia21h ago
#Microlearning trend and #EHCucate.

"With EHCucate, patients, their families and health professionals can learn more
about bleeding...

2 4
FACEBOOKTWITTERPINTERESTLINKEDINEMAIL

EHC_HAEMOPHILIA

@EHC_HaemophiliaYesterday
🤩 We are excited to invite you to the annual EHC Leadership Conference that
will take place in Brussels, Belgium from Thursday 15 June until Sunday 18 June.

...

2 5
FACEBOOKTWITTERPINTERESTLINKEDINEMAIL

EHC_HAEMOPHILIA

@EHC_HaemophiliaMarch 28
On World Liver Day, April 19, don’t miss the EHC webinar with prominent experts
'Liver health: focus on care post-viral infection and post-gene therapy'.

...

2 4
FACEBOOKTWITTERPINTERESTLINKEDINEMAIL


Show more


UPCOMING EVENTS


Apr
21
Youth Leadership Workshop 2023

Apr
26
On a Pathway Towards Healthy Ageing: Healthy Movement at Every Age

Jun
15
EHC Leadership Conference 2023

Oct
06
EHC 2023 Conference



VIEW ALL EHC EVENTS


EHC Events


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HAEMOPHILIA NEWS









ABOUT EHC


EHC - EUROPEAN HAEMOPHILIA CONSORTIUM (EHC)

EHC - The European Haemophilia Consortium (EHC) is an international non-profit
organisation that represents 46 national patients’ organisations of people with
rare bleeding disorders from 27 Member States of the European Union (EU) and
most Member States of the Council of Europe.

The EHC represents approximately 90,000 people diagnosed with a rare bleeding
condition such as haemophilia, von Willebrand Disease (VWD) and other rare
bleeding disorders across Europe. However, it is estimated that many more live
with an undiagnosed rare bleeding disorder.

The EHC draws on the knowledge of patients, healthcare professionals, the
scientific community, the European institutions and the pharmaceutical industry
to share expertise within Europe. The EHC also collaborates closely with other
European patient organisations to ensure a strong collective voice for people
with rare bleeding disorders.

Read More about the European Haemophilia Consortium (EHC)





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

Address – Rue de la Loi/ Wetstraat 28, BE-1040, Brussels

Phone: tel.: +32 2 343 41 26
E-mail: office[at]ehc.eu
Website: ehc.eu


FOLLOW US




WHERE TO FIND US

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


Miguel Crato

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Jim O’Leary

Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he
developed at age 14.

He was born in Ireland, educated and worked there until 1984 when he relocated
to the UK. Jim continued his career in the UK until he retired in 2015 and
returned to live in Ireland.

Jim has been married to Monica since 1983 and they have two sons and three
grandchildren.

Jim’s career was in Finance, and he worked for 20 years as European financial
Controller for a US multinational involved in liquid and gas analysis
techniques. Before he retired in 2015, he managed a Chartered Accountancy
practice with 2 offices and 70 employees.

In 2016 Jim joined the board of the Irish Haemophilia Society, trying to give
something back for all the support they have offered for so many years. For 6
years Jim as involved in the Inhibitor Working Group of the EHC and has been
rewarded by seeing the platform the group built and the community that was
created!

He is now very happy total up the role of the advisor to the newly formed ERIN
committee which will use the existing platform to hopefully build an inclusive
community for all rare bleeding disorders while continuing the unfinished work
for the inhibitor community, especially Haemophilia B inhibitors. He also wants
to advocate for better planning and support for persons ageing with a bleeding
disorder. This is a new situation thanks to better treatments, but the community
is not yet ready to deal with it.

 



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Nathan O’Hagan Doyle

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Dr Maria-Elisa Mancuso

Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior
Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of
IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct
Clinical Professor at Humanitas University. She obtained a post-degree in
Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is
involved in clinical research and has published several original articles in
peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and
Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of
Haematology and Haemophilia. She is reviewer for several peer-reviewed journals
and member of the Editorial Board of JTH. She is a member of several scientific
societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the
Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair
of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and
Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders.
She has been involved as principal and co-investigator in several clinical
trials, and she takes care of both children and adults with hemophilia and other
congenital bleeding disorders with a specific scientific interest in novel
therapies, prophylaxis, inhibitors, and chronic hepatitis C.

CLOSE
Maja Søndergaard Knudsen

As a patient with factor II deficiency, the diagnostic and treatment of rare
bleeding disorders is a matter dear to my heart. My motivation to participate in
the work of the ERIN committee is to improve both diagnostic and treatment for
patients with rare bleeding disorders across Europe.

Besides the ERIN work, I am a medical doctor currently working on a Ph.D. thesis
in the field of multidrug resistant organisms and the faecal microbiome

CLOSE
Ildiko Kaslik

Economist and financial expert by profession, executive coach and trainer by
passion and haemophilia advocate by every drop of my blood through my son (who
has severe haemophilia A with inhibitors). Bringing a good decade of practical
experience from the corporate insurance world, laser focus, growth mindset and
resilience from my own experience, offering you anything I can just do, in hope
that together we can make life more fulfilled for those impacted by bleeding
disorders.

When not being with my family or working in front of three way too big monitors,
you’ll find me sipping a good cup of coffee (ok, or four), reading books mainly
in the field of mental health or working out.

 

CLOSE
Amy Owen-Wyard

 

Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with
children, young people, their families and adults with severe and enduring
mental health conditions. Amy was also involved in a service improvement to
provide a holistic care approach for those in general hospitals to support both
their mental and physical health, whilst sharing her expertise and knowledge in
mental health with the wider multidisciplinary team.

Amy’s two-year old son Logan was diagnosed with Glanzmann Thrombasthenia at 7
weeks old and since diagnosis Amy has become a passionate advocate for rare
bleeding disorders. After Amy and her partner attended a Newly Diagnosed Weekend
in Manchester, UK, she decided to stand for election as a trustee for the UK
Haemophilia Society and joined the Board in November 2021.

As a parent of a child with GT Amy brings new outlook to the UK board,
previously dominated by those with lived experience of haemophilia. She is
passionate about supporting not just her son but the wider rare bleeding
disorder community. As a mental health professional working in the National
Health Service Amy also understands the workings of the healthcare sector and
the huge importance of psychological support.

Working beyond the UK to support the rare disorders community Amy is on the
steering committee for Haemnet’s Glanzmann’s 360 study.

 

CLOSE
Christina Burgess

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PARTNERS Project Consultant

Declan

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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.

CLOSE

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.

CLOSE
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.



 * 
   
   @EHC_Haemophilia
   #Microlearning trend and #EHCucate.
   
   "With EHCucate, patients, their families and health professionals can learn
   more about bleeding disorders and related treatments at their own pace, at
   any time and any place." Dr @BrendaPadilla, EHCucate educational expert.
   
   #patienteducation
   
   2 421H AGO
   
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 * 
   
   @EHC_Haemophilia
   🤩 We are excited to invite you to the annual EHC Leadership Conference that
   will take place in Brussels, Belgium from Thursday 15 June until Sunday 18
   June.
   
   👉The registrations open today and will close on Sunday, 7 May!
   
   bit.ly/3TNuJku
   
   2 5YESTERDAY
   
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 * 
   
   @EHC_Haemophilia
   On World Liver Day, April 19, don’t miss the EHC webinar with prominent
   experts 'Liver health: focus on care post-viral infection and post-gene
   therapy'.
   
   This event will have an interpretation in Russian.
   
   
   
   Register here: forms.gle/EJGtaV9tHUiQu2…
   
   
   
   #ageinghealthy #whw2023
   
   2 4MARCH 28
   
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