European Haemophilia Consortium
Budget
€1,791,079
EP Access
2
accredited persons
Staff
7
6.5 FTE
EU Grants
None
Mission & Goals
The European Haemophilia Consortium (EHC) is an international non-profit organisation representing 49 national patient 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 over 90,000 people diagnosed with a rare bleeding conditions such as haemophilia, von Willebrand Disease and other rare bleeding disorders across Europe. However, it is estimated that many more live with an undiagnosed rare bleeding disorder. The EHC's main external objectives are to: 1) Support and empower National Member Organisations (NMOs) at national and European levels and help them to engage with each other; 2) Promote access to optimal treatment and comprehensive care for people with rare bleeding disorders in Europe; 3) Ensure constructive engagement with key stakeholders; and 4) Work proactively in and contribute to European policy-making for rare bleeding di (...)
EU Legislative Interests
Clinical Trial Regulation, Orphan Medicinal Product Regulation, Cross-Border Healthcare Directive, Blood Directive, Transparency Directive, Public Procurement Directive, HTA legislation, ATMPs, social policies, disability-related policies, gender equality, EU Health Data Space, EU Health Union, Pharmaceutical legislation, Mental Health, Women's Health, AI Act, EU Critical Medicines Act, EU Biotech Act
Communication Activities
Awareness campaigns, responding to consultations, representation with the European Commission, European Parliament and European Medicines Agency
Interests Represented
Does not represent commercial interests
Member Of
Eurordis European Patients' Forum (EPF)
Organisation Members
Albanian Hemophilia Association(294), Armenian Association Hemophilics(228), Österreichischen Hämophilie Gesellschaft (ÖHG)(717), Azerbaijan Republic Association of Haemophilia (ARAH)(1400), Belarusian Association Hemophilia(800), Belgian Haemophilia Society(3000), Hemophilia Association of Bosnia & Herzegovina(50), Bulgarian Haemophilia Association(730), Croatian Hemophilia Society(50), Pancyprian Organization for Rehabilitation of Haemophiliacs(10), Czech Haemophilia Society(1500), Danmarks Bløderforening(800), Eesti Hemofiiliauhing(50), Finish Hemophilia Society(3500), Association Francaise des Hémophiles(7500), Georgian Association of Hemophilia and Donors(300), Deutsche Hämophilie Gesellschaft (DHG)(9000), Greek Haemophilia Society(2000), Magyar Hemofilia Egyesulet(200), Icelandic Haemophilia Society(50), Irish Haemophilia Society(2500), Israeli Hemophilia Association(600), Federazione delle Associazioni Emofilici(8000), Kazakhstan Association of Disabled People with Haemophilia Community of Handicapped - Hemophiliacs in Kyrgyz Republic (350), Latvijas Hemofilijas Biedrība(250), Lietuvos Hemofiljos Asociacija(450), Association Luxembourgeoise des Hémophiles(25), Maltese Bleeding Disorders Society (50) Hemolog(300), Moldavian Public Society of Haemophilie(230), Montenegrin Association for Hemophilia(20), Nederlandse Vereniging van Hemofilie-Patiënten (NVHP)(3000), Norwegian Haemophilia Society(1500), Polish Hemophilia Society(4000), Associação Portuguesa de Hemofilia(700), Romanian Hemophilia Association(2000), Russian Hemophilia Society(8000), Serbian Hemophilia Society(250), Slovenské hemofilické združenie(500), Drustvo Hemofilikov Slovenije(2000), Federación Española de Hemofilia(3000), Swedish Hemophilia Society(3000), Schweizerische Hämophilie-Gesellschaft (SHG)(1000), Tajikistan Hemophilia Society (500) Hemophilia Society of Turkey(8000), Ukrainian Hemophilia Union(3000), The Haemophilia Society(23000) Uzbekistan Hemophilia Society (500)
Additional Information
error message appears but we entered contributors with more than 10% contribution and 10000 eur in total, other contributors are below 10% - the full list of contributors with the respective amount can be found here https://www.ehc.eu/our-funding/
Commissioner Meetings
No recorded meetings with EU commissioners.