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EHC – European Haemophilia Consortium - Advocating for people with haemophilia and congenital bleeding disorders - /sitemap/
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    Posts by category

    • Category: EHC News
      • Pictures from the 2022 European Rare and Inhibitor Summit
      • EHC Think Tank 2022 Activity Report
      • EHC publishes New Produce Report 2022 Vol. 2
      • EHC is looking for a new CEO
      • VWD Working Group is looking for Ambassadors!
      • Save the date for four online interactive webinars on healthy ageing
      • ERIN peer-to-peer sessions resuming in 2023
      • The exhibition ‘Open the door to another reality’ is coming to you!
      • Goodbye officers. Hello leads.
      • End-of-the-year greetings
      • Volunteer with EHC
      • BioMarin announced an additional serious adverse event in its gene therapy clinical trial for haemophilia A
      • Meet Jeanette Fava, EHC Operations Director
      • Update on the Recall of Desmopressin Nasal Sprays
      • BioMarin follows up on previously-reported  serious adverse event in its phase I/II gene therapy clinical trial for haemophilia A
      • Pfizer/Sangamo Therapeutics report severe adverse event (SAE) from phase 3 AFFINE haemophilia A gene therapy study
      • Meet Zita Gacser, EHC Think Tank Officer
      • Announcing: EHC Emergency Displacement Fund (EDF)
      • EHC Women’s Committee marks International Women’s Day
      • EHC VWD Working Group holds a strategic retreat
      • Meet Daria Mironova, EHC Communications and Public Policy Officer
      • BioMarin reports a serious adverse event for its phase I/II gene therapy trial for haemophilia A
      • FDA places the Pfizer/Sangamo Therapeutics phase 3 AFFINE haemophilia A gene therapy study on clinical hold
      • EHCucate goes live
      • European principles for women and girls with bleeding disorders published
      • WFH and EHC sign MoU
      • EHC is looking for a public policy and communications officer to join our team!
      • Take-aways from the EHC webinar on Women and Bleeding Disorders
      • Join the EHC for #thisway campaign in 2021!
      • The UK contaminated blood enquiry resumed yesterday
      • EHC update on COVID-19 vaccines
      • WFH and EHC release joint statement on AstraZeneca COVID-19 vaccine
      • Call for additional volunteer to join the EHC VWD Working Group
      • EAHAD Physiotherapists Network is looking for members
      • World Oral Health Day 2021
      • Position Statement on COVID-19 Astra Zeneca Vaccine
      • New member on the EHC Steering Committee
      • EHC kickstarts Think Tank and welcomes new team member
      • Vaccination against COVID-19: Rationale, modalities and precautions for patients with haemophilia and other inherited bleeding disorders
      • EHC Statement on Mononine voluntary recall
      • Joint statement on Fitusiran update following EAHAD 2021 Congress
      • Update on the Ferring recall of desmopressin products
      • EHC is looking for a project consultant
      • EHC introduces new educational app on rare bleeding disorders & novel therapies
      • Guidance on COVID-19 vaccination
      • FDA puts uniQure’s gene therapy clinical programme, HOPE-B, on hold following submission of safety report
      • Call for volunteers to join EHC Youth Committee
      • Recall of Desmopressin Nasal Sprays to Affect Availability into 2021
      • WFH, EHC, NHF joint statement on global dosing hold in fitusiran trials initiated by Sanofi Genzyme to investigate new adverse events
      • In Memoriam of Dr Gabriele Calizzani
      • EHC Statement on Desmopressin Nasal Sprays availability
      • EHC-EAHAD Joint statement on AAV8-based ASPIRO clinical trial
      • EHC-EAHAD Joint position statement on Gene Therapy
      • EHC exercise campaign #thisway goes virtual
      • EHC-EAHAD Joint Statement on Home Delivery of Treatment during COVID-19 Pandemic
      • Call for researchers in educational projects on FVIII immunogenicity
      • In Memoriam: Patrick Finders-Binje
      • EHC cancels its events until June 2020
      • In Memoriam of Dr Theis Bacher
      • EHC Round Table on Patient-Clinician Education Models postponed from May to October 2020
      • Updated EHC COVID-19 Position Statement
      • UPDATED COVID19 COMMUNICATION
      • The European Haemophilia Consortium (EHC) continues to closely monitor the evolution of the Coronavirus (COVID19) pandemic. 
      • EHC moves offices
      • In Memoriam of Dr Axel Seuser
      • EHC issues position statement on Coronavirus outbreak
      • Medscape Offers Haemophilia Gene Therapy Education for Health Care Providers
      • Call for volunteers
      • EHC annual survey – Deadline extended
      • European Haemophilia Consortium (EHC) Communication on Particulate Matter in Emicizumab (Hemlibra®) and Other Biologic Agents
      • EHC activities in July, August and September 2019
      • EHC attends conferences on novel technologies and inhibitors
      • EHC annual survey – focusing on Von Willebrand Disease
      • FOR IMMEDIATE RELEASE – The European Haemophilia Consortium releases film Women and Bleeding Disorders for worldwide distribution
      • EURORDIS launches new edition of its project “Support to European Federations”
      • EHC publishes new issue of periodic review on advances in haemophilia treatment
      • EHC Now! Compilation Newsletter Sep ’18 – Jan ’19
      • Roche joins the EHC PARTNERS programme
      • EHC and EAHAD release joint statement on novel non-replacement therapies
      • Registration for the 2018 EHC Inhibitor Summit is now open
      • Call for EHC Youth Committee 2018-2020 Candidates
      • European Principles of Inhibitor Management have been published
      • Haemophilia Care in Europe 2018 Survey
      • Important Changes To 2018 EHC Conference: New Location; New Website
      • Kedrion Biopharma and Sobi sign on to EHC PARTNERS programme working towards sustainable haemophilia treatment and care in Europe
      • Ground-breaking EHC programme set to increase access to haemophilia treatment in up to 14 countries
      • Call for volunteers to join the EHC Inhibitor Working Group
      • Inhibitor Stories: Documentary on living with haemophilia and inhibitors
      • EHC launches survey on women with bleeding disorders in Europe
      • Call for volunteers to join the EHC Women and Bleeding Disorders Committee
      • Alnylam issues report on fatal thrombotic event in study of fitusiran
      • EHC is Looking for a Superhero
      • EHC Haemophilia Care in Europe : A Survey of 37 Countries Published in Haemophilia Journal
      • EHC releases statement on reported cases of sporadic CJD in the UK
      • EHC Marks World Haemophilia Day (Press Release)
      • EHC launches PARTNERS programme to increase access to treatment
      • Roche issues statement on Emicizumab clinical trial
      • Three NovoEight batches recalled due to syringe concerns
      • Read all about it: EHC publishes November Round Table report
      • The European Haemophilia Consortium (EHC) welcomes new staff member Ms Raia Mihaylova
      • EHC is looking for an independent Project Consultant
      • Holiday greetings and office closure
      • Haemophilia Stories website goes live
      • EHC publishes 2015 Annual Report
      • EHC 2016 Annual General Assembly elects new Steering Committee Members
      • Letter from the Presidents: No Brexit for EAHAD and the EHC
      • EHC creates NMO activity grant
      • EHC publishes response to the publication of the SIPPET Study
      • Registrations are now open for the EHC first Inhibitor Summit
      • SIPPET study results published
      • EHC looking for part-time Office Assistant
      • vCJD case reported in patient with different genotype
      • Presentations from the EHC 2015 Annual Conference now available
      • PPTA publishes position statement on the Zika Virus and Plasma Protein Therapies
      • EHC publishes Position Statementon Zika virus
      • Protected: Update on the implementation of the clinical trial regulation
      • Protected: Cross-border Healthcare
      • Protected: European Reference Networks
      • Protected: Early Access to Medicines
      • Protected: Orphan Medicinal Products
      • Protected: Institutional Updates
      • Protected: Data Protection Regulation
      • Protected: Personalised Medicine
      • Protected: Blood Donation
      • Call for participants to the EHC Youth Leadership Workshop
      • End of year holiday wishes and office closure information
      • EHC holds Round Table on Mild and Moderate Haemophilia
      • EHC launches survey on a European Inhibitor Network
      • SIPPET study conference abstract published
      • EHC publishes report from June Round Table
      • EHC holds Annual General Meeting
      • European bleeding disorder community meets in Belgrade
      • EHC is looking for volunteers to join its Youth Committee
      • EHC publishes new video on CoE resolution
      • Protected: EHC attends EMA workshop on haemophilia registries
      • Protected: Towards a Harmonised EU Assessment of the Added Therapeutic Value of Medicines
      • Protected: Member States look into joint purchase of medicines
      • Protected: Change in presidency of the European Union
      • Protected: EHC requests greater transparency and accessibility to clinical trials data
      • Protected: EPF and EURORDIS call on payers to support access to healthcare
      • EHC comments on the IQWIG rapid report on haemophilia therapies
      • Registrations for Pilot Leadership Conference close on 30 June
      • EHC welcomes new Inhibitor Programme Officer
      • European Parliament
      • World Health Organisation
      • Council of Europe
      • European Medicines Agency
      • European Commission
      • EU Legislative Procedures
      • European Commission Report On The ATMP Regulation
      • WHO calls for increased transparency in medical research
      • Belgium and the Netherlands announce joint procurement of medicines for rare diseases
      • An EU-wide overview of the market of blood, blood components and plasma derivatives
      • EMA Workshop on viral safety of plasma-derived medicinal products with respect to hepatitis E
      • EU ruling on blood donation and MSM
      • Council of the European Union
      • European Court of Justice rules on MSM and blood donation
      • EHC publishes reports from its last two Round Tables
      • Council of Europe adopts historic resolution on principles concerning haemophilia therapies
      • EHC unveils findings of survey on ‘Tenders and Procurement’ during World Haemophilia Day event in Dublin
      • Portuguese Association of Hemophilia denounces economic criteria in the treatment of haemophilia
      • Call for posters for EHC Annual Conference 2015
      • Report of the Penrose Enquiry gets published
      • EHC is looking for a new colleague
      • EHC hosts Round Table on factor concentrate-related inhibitor risk in haemophilia A
      • Date for the EHC Round Table on Mild Haemophilia changed to 30 November
      • EHC issues Position Statement on MSM and blood donation
      • EHC attends EURORDIS event to commemorate Rare Disease Day
      • EHC calls for candidates to its Youth Workshop
      • EHC welcomes new staff member
      • Additional treatments for Hepatitis C come to the EU market
      • EHC celebrates 25 years with cocktail reception
      • EHC holds Round Table on National Haemophilia Councils
      • EHC holds first ‘New Technologies Workshop’
    • Category: EHC Newsletter
      • EHC January 2023 Newsletter
      • EHC December 2022 Newsletter
      • EHC November 2022 Newsletter
      • EHC Now! Compilation Newsletter Sep ’19 – Jan ’20
      • EHC publishes December 2017 Newsletter
      • EHC Publishes September 2017 Newsletter
      • EHC Publishes May 2017 Newsletter
      • EHC Publishes December 2016 Newsletter
      • EHC publishes September 2016 Newsletter
      • EHC publishes May 2016 Newsletter
      • EHC publishes December 2015 Newsletter
      • EHC publishes August 2015 Newsletter
      • EHC publishes April Newsletter 2015
      • EHC Newsletter – December 2014
      • EHC Newsletter – August 2014
      • EHC Newsletter – April 2014
      • Newsletter EHC
    • Category: EHC NOW!
      • EHC 2021 Calendar of events
      • Interview with Cees Smit, author of ‘Surviving hemophilia’
      • EHC Now! President of Azeri NMO shares his impressions about the latest EHC Leadership Conference
      • Treatment options for WBD
      • EHC Women and Bleeding Disorders Webinars now online
      • Can’t stop us now! Find out what are the EHC youth up to in EHC Now!
      • EHC Now! Some things never change!
      • When life gives you lemons… or how we adapted to the new reality of COVID-19 crisis
      • EHC Now! Discussions on Psychological wellbeing in times of COVID-19
      • EHC Now! Checking-in with Declan Noone, EHC President
      • EHC Now: An exit interview with Jo Eerens
      • EHC Now! Meet the EHC Women and Bleeding Disorders Committee
      • EHC Now! Introducing the EHC VWD Platform & Working Group!
      • EHC Now! The work of the French NMO Women’s Committee
      • Advanced Medicinal Therapies – our takeaways from discussions at the European Parliament
      • EHC talks registries at the European Parliament
      • EHC Now! Report from the 2020 EAHAD Congress
      • EHC NOW! An update from EHC Headquarters January 2020!
      • EHC Now! Nastassia Kisialeva joins EHC’s team
      • EHC Now! Be part of our team – EURO 2020: Adapted Football & Physical Activity Camp!
      • EHC Workshop on New Technologies in Haemophilia Care 2019
      • EHC Now! Have you ever heard of the “Stiff-Ankle Society”?
      • EHC Now! Patient education taken to a whole new level
      • EHC Now! Meet EHC newest member, the Haemophilia Association of Uzbekistan
      • Germany passes a new law on the distribution of haemophilia treatment products
      • EHC Now! EHC General Assembly elects a new President
      • EHC Now! EHC releases the second edition of 2019 of its New Products Newsletter
      • EHC Now! Navigating through a transformed European landscape
      • EHC Now! NMO summer camps
      • EHC Now! Welcome Thierry Hoppe: EHC’s new Office Administrator
      • EHC Now! Compilation Newsletter January – June 2019
      • EHC Now! EHC reports from the 2019 Leadership Conference
      • EHC Now! Update on First Youth Fellowship Project
      • EHC Now! Pain Management Round Table, June 11, 2019 – Brussels
      • EHC Now! PARTNERS Progress Report – Year 1
      •  EHC Now! Extensive Reporting from the First European Women and Bleeding Disorders (WBD) Conference, May 24-26, 2019, Frankfurt
      • EHC Now! Half-Year Progress Report 2019
      • EHC Now! Barriers and challenges faced by women with congenital bleeding disorders in Europe: Results of a patient survey conducted by the European Haemophilia Consortium
      • EHC Now! European Parliament Elections – May 23 – 26, 2019 / MEP Rare Bleeding Disorders Group
      • EHC Now! The Netherlands: Discussion on Women with Bleeding Disorders on Dutch National TV
      • EHC Now! Clinical trials in focus
      • EHC Now! EHC’s World Haemophilia Day Ceremonies and Launch of Every Day is a Winding Road #EHCelebrate from Dublin
      • EHC Now! Youth Leadership Workshop, Amsterdam, April 5 – 7, 2019
      • EHC Now! Help the EHC count kilometers #thisway to #EHC2019 by promoting physical activity in your NMO
      • EHC Now! Have you seen the new EHC.EU?
      • EHC Now! Registration Opens for June 20 – 23 Leadership Conference
      • EHC Now! The EHC Youth Fellowship Programme Launches its First Project
      • EHC Now! An interview with EHC’s new Communications Officer, Charles Kinney
      • EHC Now! Happy 1/2 Hour
      • EHC Now! Round Table – The Future of Comprehensive Care and Outcomes in Haemophilia
      • EHC Now! EHC/European Inhibitor Network and EAHAD Launch European Principles of Inhibitor Management in Video Format
      • EHC Now! EHC launches EHConversations, a new series of video talks. First series: gene therapy and haemophilia
      • EHC Now! EHC Youth Leadership Workshop – Alumni Event
      • EHC Now! First EHC Conference on Women and Rare Bleeding Disorders
      • EHC Now! A look back at EHC 2018 activities
      • EHC Now! Third EHC Inhibitor Summit
      • EHC Now! Welcome Minette van der Ven, EHC’s new Vice-President Finance
      • EHC Now! New Youth Group in Macedonia
      • EHC Now! Round Table on Switching from Standard Therapies
      • EHC Now! A look back at the EHC 2018 Conference
      • EHC Now! Basketball camp in Lithuania
      • EHC NOW! Report from the EHC Pre-Conference Workshop
      • EHC NOW! Successful end of #thisway campaign 2018
      • EHC Now! Highlights from the EHC Conference
      • Looking forward to the EHC Conference #EHC2018
      • UK inquiry into the contaminated blood scandal
      • 2018 Meeting of the Nordic Haemophilia Societies
      • 2018 EHC Workshop on Tenders and Procurement
      • Lets Talk Period – Interview with Dr Michelle Lavin, Part II
      • Interview with Dr Michelle Lavin – von Willebrand Disease vs. reduced von Willebrand Factor
      • EHC Round Table on Women and Bleeding Disorders: A Call to Action
      • Comprehensive Care in Haemophilia: Intimacy and relationships
      • 45th National Congress of the French Haemophilia Association
      • 2018 World Federation of Hemophilia Congress – Part II
      • 2018 World Federation of Hemophilia Congress – Part I
      • 2018 European Conference on Rare Diseases and Orphan Products
      • European Principles of Inhibitor Management
      • EHC Youth Leadership Workshop 2018
      • Inhibitors in their ENTIREty: presenting the European Network on Inhibitor Research Group
      • Page 2
      • EHC Women and Rare Bleeding Disorders Committee – part I
      • Round Table on Economics and Access, Health Care Systems and Novel Therapies
      • Members of the European Parliament Group on Rare Bleeding Disorders
      • Exploring Genethon, part II
      • Exploring Genethon, part I
      • 2018 EAHAD Congress – key highlights
      • 2018 and beyond: eliminating HCV from the haemophilia community, new EHC strategic plan and powerful advocacy tools
      • Welcome to EHC NOW!
    • Category: Featured News
      • Three generations of carriers
      • EHC Launch Youth Fellowship Programme! Join now to make a difference in our community!
      • ROCHE statement on Hemlibra® (emicizumab) safety findings
      • The European Medicines Agency (EMA) publishes conclusion on risk of inhibitor development from two classes of VIII medicines
      • Take Advantage of EHC Annual Conference 2017 Early Registration Fee
      • EMA’s Pharmacovigilance Risk Assessment Committee (PRAC) publishes its review on risk of inhibitor development in PUPs from two classes of FVIII medicines
    • Category: Uncategorized
      • Coming soon
      • EHC Now: Welcoming Tajikistan to the EHC Membership
      • EHC Now! Novel technologies in haemophilia care: EHC tried and tested methods to keep-up-to date with an evolving medical landscape
      • What is haemophilia?

    Calendars

    • NMO events

    Events

    • Community Call 24/01
    • Youth Alumni Event
    • Youth Leadership Workshop 2023
    • EHC WBC Committee - Ambassadors Meeting
    • European Rare and Inhibitor Network Summit 2022
    • EHC Health Economics Workshop
    • EHC Multimedia Exhibition Gala Event
    • Leadership Academy 2021/2022
    • New Technologies Workshop 2022
    • 2022 Conference
    • Leadership Conference 2022
    • Women's Conference 2022
    • World Haemophilia Week 2022
    • Youth Leadership Workshop 2022
    • EHC Virtual Inhibitor Summit 2021
    • EHC Leadership Academy 2021/2022: Towards better inclusion of people with all bleeding disorders in the work of the NMOs
    • EHC Leadership Academy 2021: Towards better inclusion of people with all bleeding disorders in the work of the NMOs
    • Webinar on Women and Bleeding Disorders
    • Online Nurses Workshop
    • EHC Workshop on New Technologies
    • Talking VWD: Virtual Workshop
    • Webinar on Women and Bleeding Disorders
    • EHC Leadership Academy 2021: Towards better inclusion of people with all bleeding disorders in the work of the NMOs
    • EHC Think Tank virtual launch event
    • EHC Workshop on Tenders and Procurement 2021
    • 2021 Virtual Leadership Conference
    • WBD May Webinar
    • World Haemophilia Week
    • Community Call on COVID-19
    • EHC 2020 Conference Recording
    • EHC Webinar on Raising Awareness about WBD in the NMO
    • Open call with the EHC Women and Bleeding Disorders Committee
    • Pre-Conference Workshops 2020
    • EHC Webinars on Women and Bleeding Disorders
    • Virtual World Haemophilia Week 2020
    • Leadership Conference 2020
    • EHC Conference 2021
    • Inhibitor Summit 2020
    • Workshop on New Technologies in Haemophilia Care 2019
    • Virtual Youth Leadership Workshop 2021
    • Virtual Workshop on Tenders and Procurement
    • EHC New Technology Workshop 2020
    • Workshop on Tenders and Procurement 2019
    • Youth Leadership Workshop Alumni Event
    • World Haemophilia Day 2019
    • EHC Round Table on Registries
    • EHC Round Table on Gene Therapy
    • EHC Round Table on Patient-Clinician Education Models
    • Round Table of Stakeholders on Markets and Access
    • EHC Round Table of Stakeholders on Pain Management
    • Conference on Women and Bleeding Disorders
    • Round Table on the Future of Comprehensive Care and Outcomes
    • Leadership Conference 2019
    • 2019 EHC Conference
    • Inhibitor Summit 2019
    • Youth Leadership Workshop 2019
    • EHC Workshop on New Technologies in Haemophilia Care
    • EHC Workshop on Tenders and Procurement
    • 2018 EHC Inhibitor Summit
    • Round Table on Switching from Standard Therapies: Where do Novel Therapies Fit In?
    • 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
    • New Technologies in Haemophilia Workshop
    • Round Table on Switching from Standard Therapies: Where do Novel Therapies Fit In
    • 2018 EHC Conference
    • Round Table on Women and Bleeding Disorders
    • 2018 EHC 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 2021 Annual Report
    • EHC 2020 Annual Report
    • EHC 2019 Annual Report
    • EHC 2018 Survey on the Evolution of Haemophilia Care in Europe
    • Annual Report 2018
    • EHC Now! Compilation Newsletter Sep '18 - Jan '19
    • EHC Round Table on Switching from Standard Therapies: Where do Novel Therapies fit in?
    • EHC publishes its 2017 Annual Report
    • EHC Round Table on Women and Rare Bleeding Disorders
    • EHC Round Table on Economics and Access, Health Care Systems and Novel Therapies
    • 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
    • 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

    Staff

    • Laura Savini
    • Jo Eerens
    • Amanda Bok

    Ministries

    • Policy-Making, Advocacy, Awareness
    • Promote Access to Optimal Treatment and Comprehensive Care
    • Support and Empower National Member Organisations

    Events Categories

    • Conferences
    • List of EHC events
    • NMO Events
    • Other events relevant to the community
    • Past Events
    • Past round tables
    • Round Tables
    • Workshops
    • World Haemophilia Day

    Document Categories

    • Annual Reports
    • Annual Surveys
    • Newsletter
    • Position Statements
    • Round Table documents

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

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Where to find us


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