European Haemophilia Consortium
EHC

The European Haemophilia Consortium (EHC), founded in 1989, 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 actively supports its National Member Organisations (NMOs) at national and European levels, and also helps NMOs to engage with each other, with the objectives of:

  • Improving quality of life of people living with rare bleeding disorders,
  • Improving diagnostic and treatment facilities,
  • Ensuring adequate supply of – and access to – safe factor concentrates,
  • Promoting patients’ rights and raising ethical issues,
  • Following and influencing developments in European health policy,
  • Understanding the status of haemophilia care in member countries through regular surveys,
  • Stimulating research in all fields related to haemophilia and related rare bleeding disorders.

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.

Amanda Bok
CEO

Amanda Bok has been CEO of the European Haemophilia Consortium (EHC) since late 2012. 

Amanda first became involved with haemophilia when she joined the World Federation of Hemophilia (WFH) in 2009 in a communications capacity and later managed their international advocacy program. Prior to this, Amanda focused her efforts on international humanitarian aid and human rights issues, particularly child rights, in times of armed conflict. She worked for the International Committee of the Red Cross (ICRC) in Geneva and in New York. First she helped coordinate the delivery of humanitarian aid with the United Nations (UN) agencies in Geneva. Later she represented the ICRC in meetings and negotiations of the UN General Assembly and Security Council in New York.

She also previously worked for the European Commission’s Humanitarian Aid Office, Brussels-based think tank Friends of Europe and a US regional newspaper. Born in Bolivia, Amanda grew up in Colombia, Mexico, the United States, Switzerland and the Netherlands. She has a German passport and speaks English, French, Spanish, German and Dutch.

Amanda has a Master’s degree in Environment and Development from the London School of Economics and Political Science (UK), and a Bachelor’s degree in International Relations and English Literature from Austin College (US).

Fiona Brennan
Community Programmes Officer

Fiona joined the 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.

Jo Eerens
Membership Officer

Jo joined the EHC in 2010 as its first staff member. As such he set up the office and worked towards implementing and developing EHC activities. Since 2013, Jo is the Membership Officer, working with our 46 NMOs, as well as performing administrative and accounting tasks and supporting the smooth running of the office and its activities. Jo is Belgian and a patient himself, having mild haemophilia.

Prior to joining the EHC he worked for the Belgian Haemophilia Society as its Director. Jo studied philosophy in Munich, Germany, and theology in Leuven, Belgium. He spent much of his professional career working in areas such as education, social and pastoral work with a particular focus on working with people with disabilities.

Charles Kinney
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 include the Netherlands, Bulgaria, the Czech Republic, Norway, Greece, Greenland, Denmark, Japan, Macedonia, the Republic of Georgia and Bosnia and Herzegovina. Charles holds a Masters and Project Management Certification. Charles speaks several languages including English (mother tongue), Norwegian, some Klingon and broken Elvish.

Kristine Jansone
Inhibitor Programme Officer

Kristine Jansone comes to the EHC with ten years of work experience in the not-for-profit sector with a focus on youth engagement and volunteering.

In the six years prior to the EHC, Kristine led the work of the Ecumenical Youth Council in Europe (EYCE), a Brussels-based Christian youth network working towards bringing together young Christians from different denominations to overcome issues such as nationalism, xenophobia, social exclusion and proselytism. The sole employee of EYCE, Kristine was led to work independently and has gained much experience in managing multiple projects including the organisation of events, youth trainings, multi-annual campaigns as well as communication projects.

She has a background in education, communication and marketing. A Latvian national, Kristine speaks Latvian, English and Russian as well as some French and Swedish. Kristine has an academic background in theology, pedagogy and management of culture.

Saskia Pfeyffer
Office Assistant

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. Saskia 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.

Laura Savini
Public Policy Officer

Laura Savini joined the EHC in 2014 as Communications and Public Policy officer. Prior to the EHC, Laura worked in a Brussels-based pharmaceutical trade association.

A dual Belgian and Italian national, Laura has lived both in Belgium and Italy and is fluent in French, Italian and English. Laura holds a Masters' degree in Information Management from Aberystwyth University in the United Kingdom as well as a Bachelor's degree in management assistance from a secretarial college in Brussels.

Declan Noone
PARTNERS Project Consultant