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European Haemophilia Consortium

Acronym: EHC

General Information

Identification Code: 786550013705-85
Website: [object Object]
Entity Form: AISBL
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 5/27/2014
Last Update: 2/1/2024
EP Accredited Number: 0

Mission & Interests

Goals: The European Haemophilia Consortium (EHC) is an international non-profit organisation representing 48 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 (...)
Interests Represented: Does not represent commercial interests
Interests:
  • Business and industry
  • Communication
  • Consumers
  • Digital economy and society
  • Education and training
  • Employment and social affairs
  • European neighbourhood policy
  • Humanitarian aid and civil protection
  • International co-operation and development
  • Migration and asylum
  • Public health
  • Research and innovation
  • Single market
  • Sport
  • Youth
Levels of Interest:
  • european
  • national

Activities

Main EU Legislative Proposals: 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
Communication Activities: Awareness campaigns, responding to consultations, representation with the European Commission, European Parliament and European Medicines Agency
Inter-institutional or Unofficial Groupings: N/A

Head Office

Address: Rue de la Roi 28/5
Post Code: 1000
City: Brussels
Country: BELGIUM
Phone: [object Object]

EU Office

Address: Rue de la Roi 28/5
Post Code: 1000
City: Brussels
Country: BELGIUM
Phone: [object Object]

Financial Data

New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Complementary 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/financial-information-2022/

Membership Information

Members10 Percent: 0
Members25 Percent: 0
Members50 Percent: 0
Members75 Percent: 1
Members: 5
Members F T E: 4.75

Structure

Structure Type: Structure
Is Member Of: 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), Community of Handicapped - Hemophiliacs in Kyrgyz Republic (350), Latvijas Hemofilijas Biedrība(250), Lietuvos Hemofiljos Associja(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)
Organisation Members: Eurordis European Patients' Forum (EPF)