The application for the Specific Grant Agreement 2021 continues the work of EURORDIS - Rare Diseases Europe as described within the Framework Partnership 2018-21.
EURORDIS key operational objectives for 2021 build on the work of the previous work around the 4 overarching objectives:
1 Consolidating the rare disease community
2 Actively engaging RD patient representatives into the effective implementation and monitoring of legislation and strategies
3. Building capacities and empowering members and volunteers
4. Sustaining human, financial and organisational resources
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Schools for Health in Europe Network Foundation (SHE) has as an overall mission to make every school a health promoting school. Through its activities in the currently 40 SHE member countries in the European region, SHE encourages each country to further develop and implement national policies that contribute to the good health and well-being of all children and young people.
The operational objectives are:
1. Organizing a two-day SHE assembly meeting for the SHE members.
2. Maintaining the SHE helpdesk.
3. Sharing information about school health promotion.
4. Encouraging regions and countries in EU Member States to join SHE and encouraging SHE members to initiate innovative regional and cross-border cooperation.
5. Collaborating with external organisations and networks.
6. Organising a capacity building workshop for SHE members.
7. Developing and implementing teacher’s materials
8. Developing and implementing of Health Promoting School standards + indicators, version 2.0.
9. Promoting school twinning.
10. Implementing the SHE School Manual, version 2.0.
11. Organising a SHE academy on theory, research and practice of school health promotion.
12. Further improving the visibility, accessibility and quality of the new SHE website.
13. Developing communication materials to increase SHE visibility and access to evidence-based information on school health promotion.
14. Representing SHE at European/ international conferences for advocacy on school health promotion.
15. Coordinating the activities of the SHE Research Group.
16. Mapping the development and implementation of school health promotion in the EU Member States.

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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.
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