European Bodies
The Thalassaemia International Federation (TIF) contributes to the work of the European Institutions (European Commission, European Council, European Parliament, European Economic and Social Committee, European Committee of the Regions) for the development of health policies, directives, regulations, and recommendations on e.g. European public health issues, rare/chronic diseases, medicinal products, European Reference Networks (ERNs), migration, etc.
TIF has played a pivotal role in providing expert advice for advocacy and public policy improvement at the EU level, and is actively contributing to several European Commission’s initiatives.
TIF is involved in the Substances of Human Origin (SoHO) Expert Group, addressing critical issues such as adequacy, donation practices, safety oversight, and quality. Additionally, it is a part of the Health Technology Assessment Stakeholder Network, where it focuses on enhancing patient participation in national HTA processes.
Furthermore, the Federation participates in consultations on proposed policies and legislation, including the General Pharmaceutical Legislation, Health Data Space, Cross-Border Healthcare, Health Technology Assessment, and Substances of Human Origin, underscoring its commitment to shaping a comprehensive healthcare policy framework in the European Union.
Collaborations with European NGOs:
Disease-oriented:
- European Hematology Association (EHA)
- European Blood Alliance (EBA)
- European Network for Rare and Congenital Anaemias (ENERCA)
- European Hemophilia Consortium (EHC)
Patient Organisations:
Professional Societies:
- European Medicines Agency (EMA)
- European Association for the Study of Liver (EASL)
- European Society for Bone & Marrow Transplantation (EBMT)
- European Society of Endocrinology (ESE)
- European Board and College of Obstetrics and Gynaecology (EBCOG)
- European Society of Gene & Cell Therapy (ESGCT)
- European Society of Cardiology (ESC)
- European Society of Radiology (ESR)
- European Public Health Association (EUPHA)
- European Public Health Alliance (EPHA)
Multi-Stakeholder Groups:
Strategic Partnerships:
- Official Partner of the European Commission in the field of Health since 2018
- Member of the Patients and Consumers Working Party (PCWP) of the European Medicines Agency (EMA) since 2010
- Founder and Vice-Chair of the Patient Advocacy Committee of the European Hematology Association since 2011
- Participatory status at the Council of Europe, as a Member of the Conference of International NGOs since 2019
- Member of Health Technology Assessment Stakeholder Network (European Commission appointment) since 2023
- Member of Substances of Human Origin Expert Group (European Commission appointment) since 2023
- Member of Critical Medicines Alliance (European Commission appointment) since 2024
- Member of the European Centre for Disease Control (ECDC) since 2024
Experience with EU Projects:
- IthaNet project: TIF was one the original planners and collaborators in this EU-funded project, which is now a source of information concerning mainly the genetic epidemiology of haemoglobin disorders and the genotype/phenotype correlations of all variants in the alpha and beta globin foci.
- ENERCA and e-ENERCA: EU-funded projects, which promoted services for all rare anaemias across Europe, researched epidemiology, developed a national registry for member states, and the non-malignant haematology main supporter for the creation of the ERN-EuroBloodNet consortium.
- THALIA (THALassaemia In Action): This is an ongoing (2018-2024) HADEA operating grant, aiming to support TIF activities in Europe. Patients with haemoglobin disorders are increasing in numbers due to population movements in recent years. The changing epidemiology of these disorders in parts of Europe where these are not common in the indigenous populations, necessitates monitoring, raising awareness, and service improvements through the increase in expert centres and networking between treatment centres.
- ERDERA (European Rare Diseases Research Alliance): Initiated in 2024, the project aims to continue the European RD Joint Action Programme and deliver an RD ecosystem that will support need-led research through the development of new diagnostic methods, use digital transformational methods to streamline patient care, data, and research while aligning national strategies for RD with current needs. TIF leads the national mirror group for Cyprus, responsible for coordinating stakeholders on the ground, leading advocacy efforts to implement a national RD strategy, and encouraging research through disseminating information.
