EURORDIS Rare Diseases Europe is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe.
EURORDIS was founded in 1997 by four patient groups from different therapeutic fields: the Association Française contre les Myopathies (AFM), Vaincre la Mucoviscidose, Ligue nationale contre le Cancer (LNCC), and AIDES Fédération.
Today it is supported by its members and by the Association Française contre les Myopathies, AFM- Téléthon, the European Commission, corporate foundations and the health industry.

EURORDIS advocates for people living with rare diseases, supports patient engagement at EMA, as well as in HTA and ERN activities and provides services to patients such as training, information and networking on all aspects of their condition. This is done through several activities such as the EURORDIS Open Academy, the EURORDIS Membership Meeting, Rare Disease Day and the European Conference for Rare Diseases which are all EURORDIS initiatives as well as providing tailored communication through the eurordis.org website and EURORDIS regular newsletters, webinars and social media.

The EURORDIS Specific Grant Agreement 2019 continues the work of SGA 2018 within the overarching Framework Partnership Agreement 2018-2021. EURORDIS has noted that the Call for SGA 2019 has an envelope of 5M€ vs 5.8M€ in 2018. As there is uncertainty as to the approach that should be taken with respect to this application, we have decided to keep a consistency with the FPA 2018-2021 and as such to include the activities and the budget as these were presented in the FPA. We hope that this approach will give CHAFEA the maximum flexibility to take decisions on the allocation of the OG envelope amongst the FPA 2018-2021 participants.
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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 2019 (THALIA2019) 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.
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The Association of European Cancer Leagues (ECL) provides a unique platform as the only organisation with the mission of uniting, at the European level, national and regional cancer leagues to achieve a cancer-free Europe. In coherence with the FPA 2018-2021, this SGA focuses on the core activities to be implemented in 2019 in respect of the following strategic objectives:

1) Informing policy to ensure cancer control remains high on the political agenda;
2) Promoting the European Code Against Cancer (ECAC) as the essential tool for cancer prevention;
3) Supporting leagues in the implementation of the Council Recommendation on Cancer Screening;
4) Uniting leagues to advocate for equal access to treatment, support, and rehabilitation for cancer patients;
5) Advocating for the European Guide for quality improvement in cancer control to be mainstreamed in national
cancer plans.

These objectives will be achieved by several actions, including:
- performing a survey of national contact points to update the triennial tobacco control scale;
- securing the re-establishment of the MEPs against Cancer (MAC) group in the next mandate of the European Parliament;
- publishing a policy framework of supportive actions to implement the European Code against Cancer;
- developing a web portal on cancer screening to be hosted on the ECL website (www.cancer.eu);
- drafting and disseminating new guidelines on healthcare professionals communication with patients, and effective use of volunteers by cancer leagues;
- collecting best practice on the implementation of the CanCon guide at the national level.

This proposal has relevance to the annual work programme through its focus on health determinants and health promotion, boosting cancer control, and equitable access to healthcare.
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