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.Progress Outline 2018
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).Progress Outline 2018
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.Progress Outline 2018
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).Progress Outline 2018
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.
Capacity Building Workshop for Patient Organizations – 12-13 October 2019
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 such diseases in Europe, TIF organized a multidisciplinary Capacity Building Workshop aimed at both patients organizations and individuals with thalassaemia, in Hamburg, Germany, from 12 to 13 October 2019.
TIF’s highly productive workshop entitled ”Capacity, Competence & Confidence: Building the three CS for patients’ organizations”, was attended by over 120 patient organizations’ representatives and patients from 12 European countries, including Cyprus, Greece, Germany, France, Italy, England, Austria, Ireland and Sweden. Actively involved in the workshop’s sessions were also several participants from America, Canada, India, Iran, Saudi Arabia and Turkey.
Through a rich and carefully tailored training program, thalassaemia patients’ representatives had the opportunity to obtain the necessary knowledge and skills, in order to become capable of collaborating with decision-makers in their respective countries, carry out well-organized and constructive actions to control and manage the disease, and protect their rights. The workshop also enabled thalassemia patients to acquaint, discuss and share common concerns to better meet the challenges they face on a daily basis.
In particular, issues such as the importance and role of patient associations for effectively claiming multidisciplinary quality care services, new developments in thalassaemia treatment and existing challenges, the necessary tools and methods for communicating and collaborating, and lots of other topics were presented and analyzed.
The multidisciplinary training workshop was organized and carried out in the framework of the European co-financed Program of Activities entitled ‘THALassaemia In Action’ (THALIA) and implemented by TIF for the period 2018-2021.
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.
In view of a significant increase in the numbers of both carriers and patients of a haemoglobin variant in all EU Member States, TIF has undertaken the task to raise awareness on the matter and promote synergies between patients, healthcare professionals and Member States for the control of this migration-related phenomenon.
This section focuses on the global epidemiology of haemoglobin disorders and provides key information about beta thalassaemia (major) and sickle cell disease in terms of pathology and treatment.
This is a visual representation of the rationale behind THALIA: people from countries with high prevalence in thalassaemia (Mediterranean region, Middle East, South East Asia, Pacific) and sickle cell disease (Africa) have migrated to all countries of Europe.
The recent population movement has led to a sharp increase of the number of migrant carriers of beta thalassaemia in the region. The question is whether the European national health systems are ready to deal with the migration of haemoglobinopathies and if migrants themselves are aware of their condition and rights.
FOCUS ON THALIA
THALIA is a description of the work of TIF, focusing on Europe. With a specific set of activities that derive from TIF’s four (4) main pillars of work, TIF aims to raise awareness and educate patients, healthcare professionals, policymakers and the general public on the needs of patients and carriers with thalassaemia arriving to Europe.
Adopting a step-wise approach with a dual aim (the effective treatment and prevention of thalassaemia), TIF aims to achieve a snow-ball effect, starting with activities involving a modest number of people and then continuing with European peer-to-peer actions and community awareness at local, national and regional levels. The THALIA activities touch upon the areas of education, awareness raising, policy advocacy and research and include, amongst others, the development and translation of e-learning platforms for patients and healthcare professionals, delegation visits to countries of priority (France, Germany, Sweden, Austria and Serbia) and capacity building courses for patients and healthcare professionals.
View the full THALIA poster
Is Europe ready (for haemoglobinopathies on the move)?