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.


The ERN ReCONNET 3-year Work Plan will set the stage for crucial achievements in the field of rare ad complex connective tissue diseases (rCTDs), allowing the Network to address its main commitment: the benefit of patients affected by rCTDs.
As the aim of the 3-year program is to establish, coordinate and manage patients and HCPs communities and to pool knowledge and expertise across the EU, all the target groups will participate in all the activities planned. Specifically, the main target groups are represented by: patients, caregivers and families, HCP members, healthcare professionals, scientific societies.
The main activities that will be carried out are related to the coordination and management, empowerment and engagement of patients, families and caregivers, sharing of best practice, training and e-learning, research and innovation knowledge, dissemination and networking and sustainability.
The expected results of the activities of the next three years will be represented by the availability of specific tools aimed at harmonizing the clinical and economical approach to rCTDs and at creating minimum standards of healthcare services essential for the management of rCTDs across Europe and providing a crucial impact on the lives of more than 500.000 people affected by rCTDs.



Individuals with chronic diseases and mental disorders often experience work-related problems, such as unemployment, absenteeism, reduced productivity and stigmatization in the workplace, leading to negative consequences at individual, national and European level. The rising prevalence of chronic diseases and mental disorders as well as the current economic crisis make this issue even more problematic, requiring action in terms of innovative strategies to improve the participation of these persons in the labor market. Unfortunately, this is hindered by a lack of knowledge of which strategies are available in the different European countries and their effectiveness, and a lack of clarity regarding the employment-related needs of these individuals, leading to gaps between what is offered and what is needed. Therefore, PATHWAYS aims a) to identify integration and re-integration strategies that are available in Europe and beyond, b) to determine their effectiveness, c) to assess the specific employment-related needs of persons with chronic diseases and mental disorders and d) to develop guidelines supporting the implementation of effective professional integration and reintegration strategies. Involvement in PATHWAYS of 12 partners with vast expertise in the area of chronic and mental conditions and employment from 10 different European countries allows to compare strategies between different European regions, taking into account cultural, social, and political differences. Stakeholder consultations, including advocacy organizations, employers, policy makers, international organizations, and European Union delegates, will provide useful insights as to the development and implementation of policy recommendations to improve their integration or reintegration into the workplace. In this way, PATHWAYS will provide the first steps to work towards a more inclusive labor market in which persons with chronic diseases and mental disorders can meaningfully participate.


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 (THALIA) 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 medical specialists in priority countries with fellowships.

Knowledge is our power.


OBTAINS-E2 (OBesity Training And INformation Services for Europe, phase 2) consists of three actions specifically serving our European members and the wider European population. The first action develops and exploits our on-line distance learning opportunity for health professionals to gain a Specialist Certification in Obesity Professional Education (SCOPE). Course modules are accredited with Continuing Professional Development (CPD) points for professional development.

The second action develops our data resources to provide freely available graphs and tables to download, along with interactive maps providing recent estimates of obesity prevalence; policy maps showing national policy development in map format; and intervention maps showing community-level interventions, and available information on their target groups, costs, duration and impact.

The third action develops support for policy making by (i) running Policy Laboratories which are meetings of key researchers, leading non-governmental and professional organisations, and policy officials in relevant departments; (ii) publishing Policy Briefings as a freely available resource; and (iii) building a Policy Repository including the research which underlies the policies, examples of their different implementation, case studies and advocacy materials, and where available the evidence of their effectiveness and cost-effectiveness.

