Leading the way once again in educating patients on important aspects of thalassaemia and other haemoglobinopathies management, but also in improving the existing conditions and services for the support and care of people affected by such genetic diseases at the European level, the Thalassaemia International Federation (TIF) organized a multi-thematic Educational Workshop addressed to both thalassaemia patient organizations and individual patients, in Stockholm, Sweden, from July 2 to 3, 2022.
The event, entitled “Capacity Building Workshop for EU Thalassemia Associations in Europe”, was met with great success, since more than 100 representatives of patient associations and patients from 20 European countries, including Cyprus, Greece, Germany, France, Italy, Romania, Austria, Norway, Denmark, Sweden, and the United Kingdom took active part in its proceedings. The event also saw the participation of the European Organization for Rare Diseases (EURORDIS).
The Workshop In a Nutshell
The first day of the Workshop dealt with the clinical management of thalassaemia and the latest developments in scientific research on haemoglobinopathies, with an emphasis on the revolutionary techniques of gene therapy and processing. Distinguished haematologists from Northern and Central Europe spoke about the care provided to patients with thalassaemia and sickle cell disease (SCD) in their respective countries, highlighting at the same time the challenges that the migration of populations from third countries with a high prevalence of these diseases entails for the national health systems of the EU.
In the spotlight of the second day of the Workshop were patients themselves, who had the opportunity to be informed about the most recent European health policies that concern them, in order to become competent interlocutors with decision-makers, gain further knowledge and skills to optimally manage their disease, to exchange experiences around living with the disease and to share common concerns about how to best deal with the challenges they face every day.
The attendees watched with particular interest the testimonies of patients from Italy and England who spoke about their experiences with gene therapy and the innovative medicinal product Reblozyl which extends the interval between blood transfusions needed by people with β-thalassaemia major, respectively.
The Patients Programme sought to EMPOWER, EDUCATE and INFORM representatives of national thalassaemia associations on issues of crucial importance, such as:
- Clinical Management of Haemoglobin Disorders
- Multidisciplinary Care
- Innovative Therapies & Medicinal Products for Thalassaemia
- New Scientific Advances in the Pipeline
- National Healthcare Services for Haemoglobin Disorders
- Healthcare Reforms Through Patient Advocacy
- Life with Thalassaemia – Opportunities, Challenges & Dilemmas
In her statement, TIF’s Executive Director, Dr. Androulla Eleftheriou, stated that ‘improving the active involvement of patients in the formulation of policies concerning their health is of primary importance both for the fulfillment of their medical, social and other needs that are not satisfied, as well as for their effective access to innovative treatments. Although the progress made in Europe in recent years is remarkable and the tools available are many and distinct, efforts are still needed for patient associations to reduce the gap that separates them from decision-making processes.’
The promotion and support of patient education regarding their illness, their rights to quality medical care and multidisciplinary needs, are directly intertwined with the vision and mission of TIF since its foundation in 1986. The Federation currently represents 232 associations of patients with thalassemia and other blood disorders from a total of 63 countries, providing, as part of its wider work, a large and constantly renewed range of informative and educational activities for patients and health professionals.
The organization of the Capacity Building Workshop for EU Thalassemia Associations in Europe took place in the context of the European co-financed activity programme ‘THALassemia In Action (THALIA) 2022-2025’.