THALIA: Brief Description
Thalassaemia, a previously fatal childhood genetic disease, can today be effectively prevented and adequately treated, as a result of the medical and scientific advances that took place in the last three decades. However, thalassaemia’s prioritisation on national health agendas and the development of national plans for its effective control in the EU has been hampered by the many challenges involved, mainly related to its rarity and migration.
THALassaemia In Action (THALIA) focuses on Europe, targeting patients with thalassaemia and other haemoglobinopathies, healthcare professionals and policymakers. THALIA has a special focus on:
1) countries that receive most refugees and migrants from countries with high prevalence in thalassaemia; namely France, Germany, Sweden
2) major transit countries for migrants; namely Serbia and Austria.
On the map below, you can see the countries that TIF, through the THALIA project, focuses on. These countries are marked in red.
THALIA: Aims and objectives
Based on TIF’s main pillars of activities, THALIA aims to attain four general objectives:
- Continue and strengthen the education of patients/parents and healthcare professionals, as well as the patients’ capacity, competency and networking within and across countries and regions of Europe. This is to be achieved via the development of e-learning tools and the launching of capacity building courses and training seminars.
- Raise awareness on thalassaemia and the importance of optimal care amongst the public at large, as well as among THALIA target groups at national and European level. This will be attained using an array of online tools, activities and publications.
- Prioritise haemoglobin disorders and their control (prevention and management) at European level. This will be accomplished by establishing and training national patients’ associations in EU priority countries, creating an EU Electronic Health Record and entering into policy dialogue with policymakers at national and European level.
- Support research programmes and studies focused on the clinical management of Thalassaemia. This is to be achieved via the publication of guidelines on the clinical management of Thalassaemia, participating in scientific conferences and providing medical specialists in priority countries with fellowships.
THALIA: Division of Labour
The THALIA project is divided into seven Work Packages, which are described in the tabs below:
WP1: Work Programme Management
Work Package (WP) 1 aims to render the project deliverables, on time, at a high level of quality, within budgetary limits and in communication with EC, covering all management aspects of THALIA2018 (operational, financial, risk), as well as reporting. The deliverables under this WP are an Interim Report and a Periodic/Annual Report that will include the Operational Plan of THALIA2018, a quick reference manual for TIF staff members on their annual work.
WP2: Education (Pillar I)
Work Package (WP) 2 aims to continue and strengthen the education of patients/parents and healthcare professionals, as well as the patients’ capacity, competency and networking within and across countries and regions of Europe. A number of activities are foreseen under three categories:
- a) Online education tools for patients and healthcare professionals across Europe (Educational Platform for Healthcare Professionals; Educational Platform for Patients; TIF Digital Library);
- b) Capacity building courses for patients, healthcare professionals and volunteers from France (Capacity Building Course for newly established association and patients; Capacity Building Course for healthcare professionals; Traineeship for ESC volunteers) and
- c) Fellowships for EU physicians (Renzo Galanello Fellowship Programme).
WP3: Awareness Raising (Pillar II)
Work Package (WP) 3 aims to raise awareness on Thalassaemia and the importance of optimal care among the public at large, as well as among THALIA target groups, namely carriers and patients with Thalassaemia, healthcare professionals in the fields of Haematology and Paediatrics and policymakers at national and European level and promote relevant activities amongst national associations. To this end, TIF website will be translated into French, German, Greek, Italian and Arabic by the end of 2018 and will be enriched with content from the annual Thalassaemia Video Challenge. Thalassaemia Patients Connect Platform and THALIA Mobile App will be used to reach EU-based patients, while a Pocket Guide for Healthcare Professionals will be drafted and disseminated.
WP4: Policy Advocacy (Pillar III)
Work Package (WP) 4 aims to prioritise haemoglobin disorders and their control (prevention and management) at international/United Nations (UN) and European Union (EU) levels. TIF will work in a simultaneous top-down and bottom-up approach, raising awareness among international and European institutions (Micro-campaign on Syria crisis and thalassaemia spread), creating quality tools for national health systems (Thalassaemia EU Electronic Health Record/ Architecture) and empowering patients through the establishment of associations wherever there are patients (New Thalassaemia national associations) and via the exchange of good practices between associations (TIF EU Twinning Programme).
WP5: Research (Pillar IV)
Work Package (WP) 5 aims to support research programmes and studies focused on treatment improvements and the final cure. Through WP5, TIF will inform patients about clinical trials using its educational tools and will invest on the creation of an EU-wide Electronic Health Record. Moreover, TIF Guidelines for the clinical management of thalassaemia will be given further visibility via their publication in peer-reviewed academic journals and TIF experts will participate in scientific conferences to raise awareness among the research community about thalassaemia and haemoglobinopathies.
WP6: Dissemination of Results
Work Package (WP) 6 aims to provide the maximum visibility and public awareness of THALIA’s key vision and planned activities by developing and following a sound dissemination and communication strategy. All key stakeholders and target groups (patients, healthcare professionals, policymakers) will be actively involved from the start of the project, in order to create awareness for TIF’s Work Programme, receive feedback from them and maximise the impact of THALIA activities and results. A number of activities is foreseen to be implemented via a) online media (website, social media pages, newsletters, email blasts), b) traditional media (articles, TV appearances) and c) events (press conferences).
WP7: THALIA2018 Evaluation
Work Package (WP) 7 aims to establish and coordinate internal and external evaluation mechanisms which will assess the running of the work programme, the quality of deliverables and the achievement of objectives and impact. THALIA2018 will be evaluated internally by the Board of Directors and the Executive Director who will draft an Internal Evaluation Report. The external evaluation of the work will be assigned to a third independent party that will deliver a comprehensive report.
THALIA: EU Policy Recommendations
Its aim is to provide an overview of the multiple factors that impact the lives of people with Thalassemia and Sickle Cell Disease living in the European Union and highlight specific recommendations addressed to policymakers in order to address key challenges, unmet needs and policy gaps and ultimately improve the patients’ health and lives.
TIF calls upon the EU and all its Member States to ensure that the recommendations set out herein are incorporated into and effectively implemented via key instruments at national and European levels. More action and sustained collaboration between all interested stakeholders are required to effectively develop and implement policies and services that guarantee better health outcomes and more robust healthcare systems.
TIF and THALIA´s latest news on thalassaemia and haemoglobin disorders, in a nutshell. The THALIA newsletters are issued quarterly, but extra editions are also featured. Updates on the Federation’s country activities, international projects, educational news for patients and healthcare professionals and many informational resources are included.
The major component of TIF’s internationally accredited Educational Programme is the organisation of educational events, such as conferences, seminars and workshops, held at local, national, regional and international levels.
Aiming at the continuous training of patients on issues relevant to the management of thalassaemia and other haemoglobinopathies, as well as the improvement of existing conditions and services provided for the support and care of patients with these chronic conditions in Europe, TIF organises yearly in the context of the THALIA project educational activities two major workshops for patients/patient organisations and healthcare professionals.
THALIA: Mobile App
Committed to continuing efforts to develop useful tools for individuals with thalassaemia and haemoglobin disorders worldwide, TIF introduces a novel mobile health application for patients with thalassaemia and sickle cell disease, the THALIA Mobile App.
This application is primarily designed to constitute a useful digital tool in helping individuals self-manage their disease more effectively on a daily basis.
TIF was invited by CHAFEA in August 2019 to submit a poster describing its work and achievements in the framework of THALIA. The poster was approved by the CHAFEA team and was electronically exhibited at the High-Level Conference drawing the attention of all participants.
The THALIA poster is divided into 3 parts, providing details on the epidemiology and pathophysiology of the thalassaemia and sickle cell syndromes and how these are linked to migration. Special emphasis is given on the methodology and activities of the THALIA project that started in 2018 and will end in 2022. These are a reflection of TIF’s core activities, adjusted to the needs of thalassaemia-related stakeholders residing in or arriving to EU countries.
Every year TIF’s Executive Director highlights in a dedicated article a significant issue related to migration and the increasing prevalence of thalassaemia and haemoglobin disorders in Europe.
Is Europe ready (for haemoglobinopathies on the move)?