THALassaemia In Action: Le projet THALIA
THALIA: Description Brève
La thalassémie, maladie génétique infantile pendant longtemps mortelle, peut aujourd’hui être prévenue et traitée de manière appropriée et efficace, grâce aux progrès médicaux et scientifiques de ces trois dernières décennies. Cependant, la priorisation de la thalassémie dans les programmes de santé nationaux et le développement de plans nationaux visant à contrôler la maladie de manière efficace dans l’UE a été entravée par les nombreux défis inhérents à la maladie, principalement liés à sa rareté et aux migrations.
L’initiative THALassaemia In Action (THALIA) se concentre sur l’Europe, ciblant les patients atteints de thalassémie et d’autres hémoglobinopathies, les professionnels de la santé et les décideurs politiques. THALIA se concentre en particulier sur :
1) les pays qui accueillent le plus de réfugiés et de migrants en provenance des pays à forte prévalence de thalassémie, à savoir la France, l’Allemagne, la Suède ;
2) les principaux pays de transit pour les migrants, à savoir la Serbie et l’Autriche.
Sur la carte ci-dessous, vous pouvez voir les pays sur lesquels la FIT, à travers l’initiative THALIA, se concentre. Ces pays sont marqués en rouge.
THALIA : Finalité et objectifs
S’appuyant sur les principaux piliers d’activités de la FIT, THALIA vise à atteindre quatre objectifs généraux :
- Poursuivre et renforcer l’éducation des patients/parents et des professionnels de la santé, ainsi que la capacité, les compétences et la mise en réseau des patients au sein et entre les pays et régions d’Europe. Cet objectif doit être atteint via le développement d’outils d’apprentissage en ligne et le lancement de cours de renforcement des capacités et de séminaires de formation.
- Sensibiliser le grand public ainsi que certains des groupes cibles de l’initiative THALIA au niveau national et européen à la thalassémie et à l’importance d’une prise en charge optimale. Cet objectif sera atteint à l’aide d’un éventail d’outils, d’activités et de publications en ligne.
- Prioriser les troubles de l’hémoglobine et leur contrôle (prévention et prise en charge) au niveau européen. Cela peut passer par la création et la formation d’associations nationales de patients dans les pays prioritaires de l’UE, permettant de mettre en place un dossier de santé électronique de l’UE et d’engager un dialogue politique avec les décideurs politiques aux niveaux national et européen.
- Soutenir des programmes de recherche et d’études axés sur la prise en charge clinique de la thalassémie. Cet objectif devrait être atteint via la publication de lignes directrices sur la prise en charge clinique de la thalassémie, la participation à des conférences scientifiques et l’octroi de bourses aux médecins spécialistes dans les pays prioritaires.
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.
Patient Testimonials
THALIA: Workshops
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.
THALIA: Poster
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.
THALIA: Articles
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)?
Publications
Ensuring equitable access to vaccines for refugees and migrants during the COVID-19 pandemic
Haemoglobinopathies in Europe: health and migration policy perspectives
Patients' Stories
Treating Syrian children suffering from thalassemia
Supporting Syrian refugees in Turkey with the health services and guidance they need
Angelina Jolie visits refugee family in Iraq that escaped the war in Syria, but not thalassaemia
Fleeing Syria: A Mother’s Wrenching Choice
In Absentia: describing the toll of war on health in Syria
Resettlement offers hope to ailing Syrian refugees in need of treatment
Syria: “Chronic conditions are largely invisible in war.”
Malaga offers hope to Syrian children
Jordan health cost hikes leave Syrians in dire need
Syria: The invisible consequences of war for patients with chronic conditions
