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EAHAD European Association for Haemophilia and Allied Disorders

Acronym: EAHAD

General Information

Identification Code: 027577048901-13
Website: [object Object]
Entity Form: International Non profit organisation
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 2/9/2023
Last Update: 1/15/2024
EP Accredited Number: 0

Mission & Interests

Goals: The European Association for Haemophilia and Allied Disorders (EAHAD) is a multidisciplinary association of healthcare professionals who provide care for individuals with haemophilia and other bleeding disorders. Its members include haematologists, internists, paediatricians, nurses, physiotherapists, laboratory scientists and researchers from across Europe. Since its establishment in 2007, EAHAD has worked to improve the situation of people living with haemophilia and other bleeding disorders.
Interests Represented: Does not represent commercial interests
Interests:
  • Business and industry
  • Education and training
  • Public health
  • Research and innovation
Levels of Interest:
  • national
  • sub-national
  • european
  • global

Activities

Main EU Legislative Proposals: Health policy ( rare diseases, health professionals, allied health professionals, clinical trials...) Here are the specific activities: - HTA Health Technology Assessment and HTA Stakeholder Network. Regulation EU2021/2282 of 15/12/2021: we are currently completing the form and preparing the information material to submit to be selected as part of the Network. The call for application has been open on 12/12/2022. - Clinical Trials Directive 2001/20/EC: We have adopted a joint position with the European Haemophilia Consortium (EHC) " Clinical Trials : reducing bureaucracy in Clinical Trials: now is the time" . We call for urgent actions to make clinical trials less bureaucratic and more patient centred, efficient and cheaper. We are considering our participation in the Public Consultation on a multi-stakeholder plate-form to improve clinical trials in the EU launched by the EC and the Heads of Medicines Agencies on 03/02/2023 - Blood Directive 2002/98/EC and Tissues and Cells Directive 2004/23/EC: we are acting to maximise patient access to effective gene and cells therapies by promoting the best possible structures to deliver the care in Europe. We have adopted with EHC a Joint Statement on promoting hub and spoke model for the treatment of haemophilia and rare bleeding disorders using gene therapy. This model is supported by the scientific and medical community and the patients organisations. It has been published in the Haemophilia Journal. It has been produced by our Gene Therapy Working Group chaired by Professor Wolfgang Miesbach. - EU pharmacovigilance system: we have developed a pharmacovigilance program ( called EUHASS) to monitor the safety of treatments for people with inherited bleeding disorders in Europe. Haemophilia treatment centres report adverse events directly to the EUHASS website and regular surveillance reports are produced.
Communication Activities: Series of webinars on Gene Therapy ( access to treatment, hub and spoke model, multidisciplinary team) Publications in Haemophilia Journal European Principles ( Nurses, Physio, Psycho): publication and infographic
Inter-institutional or Unofficial Groupings: N/A

Head Office

Address: 30 B Cours Saint Michel
Post Code: 1040
City: Bruxelles
Country: BELGIUM
Phone: [object Object]

EU Office

Address: 30 B Cours Saint Michel
Post Code: 1040
City: Bruxelles
Country: BELGIUM
Phone: [object Object]

Financial Data

New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]

Membership Information

Members10 Percent: 0
Members25 Percent: 0
Members50 Percent: 0
Members75 Percent: 0
Members: 4
Members F T E: 4

Structure

Structure Type: Structure
Is Member Of: Our members are individuals, natural persons such as medical doctors, nurses, physiotherapists and psychosocial professionals. Legal persons cannot be members. We have more than 100 members including medical doctors, allied health professionals and industry personel (without voting rights) The webpage to apply is: https://eahad.org/membership/
Organisation Members: Our association is not a member of any other bodies/ networks/ federations/ confederations.. but collaborates with other organisations such as European Haemophilia Consortium, European Haemophilia Association.