Research / Projects

3rd Health Programme (2014-2020)
THALassaemia In Action 2020 [THALIA2020]
Thalassaemia, a previously fatal childhood genetic disease, can today be effectively prevented and appropriately treated, as a result of medical and scientific advances in the last three decades. Howe...
Thalassaemia, a previously fatal childhood genetic disease, can today be effectively prevented and appropriately treated, as a result of medical and scientific advances 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 2020 (THALIA2020) focuses on Europe, targeting patients with thalassaemia and other haemoglobinopathies, healthcare professionals and policymakers and aims to attain four general objectives, based on TIF’s main pillars of activities:

1. 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.

2. 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.

3. 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.

4. 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 fellowships to medical specialists.

Knowledge is our power. Unity is our strength.
Start date: 01/01/2020 - End date: 31/12/2020

Call: Financial Contribution to the Functioning of Non-Governmental Bodies - Invitation to submit proposals for Specific Operating Grant Agreements (SGA)
Topic: Research
3rd Health Programme (2014-2020)
THALassaemia In Action 2021 [THALIA2021]
Thalassaemia, a previously fatal childhood genetic disease, can today be effectively prevented and appropriately treated, as a result of medical and scientific advances in the last three decades. Howe...
Thalassaemia, a previously fatal childhood genetic disease, can today be effectively prevented and appropriately treated, as a result of medical and scientific advances 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 2021 (THALIA2021) focuses on Europe, targeting patients with thalassaemia and other haemoglobinopathies, healthcare professionals and policymakers and aims to attain four general objectives, based on TIF’s main pillars of activities:

1. 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.

2. 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.

3. 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.

4. 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 fellowships to medical specialists.

Knowledge is our power. Unity is our strength.
Start date: 01/01/2021 - End date: 31/12/2021

Call: Invitation to submit proposals for Specific Operating Grants (SGA) for the year 2021 under the Annual Work Programme 2020 of 3HP
Topic: Research
3rd Health Programme (2014-2020)
EUROPEAN REFERENCE NETWORK ON RARE HEMATOLOGICAL DISEASES [ERN-EuroBloodNet]
ERN-EuroBloodNet main goal is to improve the healthcare and overall quality of life of patients with a rare hematological disease (RHD) by facilitating best practice sharing for safe and high-quality ...
ERN-EuroBloodNet main goal is to improve the healthcare and overall quality of life of patients with a rare hematological disease (RHD) by facilitating best practice sharing for safe and high-quality cross-border healthcare and developing more evidence based clinical tools and cost-effective treatments. As a contribution to the 3rd Health Programme (objective 4-Facilitate access to better and safer healthcare for EU citizens), EuroBloodNet will aim at decreasing current cross-border health barriers. EuroBloodNet gathers 66 highly skilled multidisciplinary healthcare teams in 15 Member States, and advanced specialised medical equipment and infrastructures which will facilitate concentration of resources for the design, validation and implementation of high-quality and cost-effective services aimed at facing the challenges of RHD. Involvement from the outset of patient associations will contribute to patient empowerment, in keeping with EuroBloodNet patient-centred approach. EuroBloodNet’s objectives will be achieved through a) the implementation of a reliable repository of best healthcare services available across EU, guidelines for RHD, systematic assessment of clinical outcome indicators, assessment and promotion of ongoing clinical trials and collaborative research initiatives, and b) the development of inter-professional consultation systems and blended (on-site & on-line) educational programmes and short stays. Expected outcomes include reduction of healthcare inequalities for RHD in the EU by a)establishing a cross-border referral system allowing safe information, samples and patient mobility, b) provision of equal access to highly specialised procedures and innovative therapies resulting from best practice sharing, continuous medical education and virtual interprofessional consultation for complex RHD cases, and c)facilitation of a timely and efficient translation of research results into patient oriented strategy at the clinical and the public health level
Start date: 01/03/2017 - End date: 28/02/2018

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2017
Topic: Research
3rd Health Programme (2014-2020)
EUROPEAN REFERENCE NETWORK ON RARE ADULT CANCERS [EURACAN]
Rare cancers (defined as an incidence <6/100000/yr) represent 20% of adult cancers but 30% of cancer mortality. There are
over 300 rare cancer types which may affect all organs. A variety of histologi...
Rare cancers (defined as an incidence <6/100000/yr) represent 20% of adult cancers but 30% of cancer mortality. There are
over 300 rare cancer types which may affect all organs. A variety of histological and molecular subtypes are emerging
following the progresses of genomic classifications.
EURACAN is a patient centered ERN dedicated to the improvement of diagnosis, treatment management, knowledge,
research and communication on all adult solid rare cancers for patients, families, physicians and all stakeholders. EURACAN
will work on excellence guidelines, their implementation, innovation, research, patient pathways, cross border health care,
and patient communication. EURACAN gathers 67 centers from 18 EU countries. These centers were identified on the basis
of documented expertise, accrual in rare cancers, and endorsement by their member state.
EURACAN aims to open to additionnal centers, to expand to all EU countries and to host at least health care provider expert
for a domain for a region of 5-10 million inhabitants. EURACAN has also invited associated partners from major scientific
societies, ESMO, ECCO, ESSO, EORTC, and major patient advocacy groups to participate to the different network bodies.
EURACAN will interact with other ERN with related topics, in particular benign conditions.
In EURACAN, rare adult solid cancers were grouped in 10 domains corresponding to the RARECARE classification:
sarcomas, rare gynecological cancers, rare urological cancers, neuroendocrine tumors, rare digestive cancers, endocrine
tumors, rare head and neck, thoracic, skin, ocular and brain cancers.
EURACAN will propose a unique network to all European patients affected with rare cancers in all member states enabling
an optimal care, access to rare resources, education, innovation and research to all EU patients.
Start date: 01/03/2017 - End date: 28/02/2018

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2017
Topic: Research
3rd Health Programme (2014-2020)
EUROPEAN REFERENCE NETWORK ON RARE HEMATOLOGICAL DISEASES [ERN-EuroBloodNet]
Rare Hematological Diseases (RHD), covered by ERN-EuroBloodNet, involve more than 450 different diseases, malignant or non malignant, inherited or acquired, with different clinical and etiological fe...
Rare Hematological Diseases (RHD), covered by ERN-EuroBloodNet, involve more than 450 different diseases, malignant or non malignant, inherited or acquired, with different clinical and etiological features that preclude the use of a unique methodological approach to reach the common goals of the network. Nevertheless, the first working year of our network demonstrated that RHD share common problems including the frequent paucity of publicly accessible repositories of experts and facilities across Europe, leading to delays in diagnosis and treatment, and also gaps in education. Activities developed during the first year of ERN-EuroBloodNet’s activity therefore focused on gathering comprehensive information on experts and state-of-the-art guidelines for diagnostic and treatment procedures, as starting point for subsequent objectives.
The annual programme for the second year is structured in two main directions: a) Expand and exploit the dynamic ERN-EuroBloodNet repository of RHD experts and facilities gathered during the first year. Based on the gaps identified, new actions will be promoted to improve the delivery of best care and promotion of research and patient registries, b) promote continued medical education and patient education (also based on the identification of gaps in this field), especially through eLearning and preceptorships in expert centres. This annual programme will also promote the Clinical Patients Management System (CPMS) among ERN-EuroBlood Members, and help to customize it to the various RHD. ERN-EuroBloodNet will also cooperate with the ERNs coordinators group and other working groups in the field of rare diseases.
Policy reports will be elaborated to facilitate shaping of national health policies in order to improve the delivery of health services and the best allocation of resources needed for specific RHDs.


Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: Research