The European Organisation for Rare Diseases – EURORDIS – represents the voice of an estimated 30 million people living with a rare disease in the EU, and their families. The proposal submitted for Operating Grant FPA 2015-2017 is structured around four main objectives of utmost importance for the European rare disease patients’ community:1. To consolidate the Rare Disease patients’ community and strengthen the RDs patients’ voice;2. To actively engage rare disease patients’ representatives into the effective implementation and monitoring of relevant EU legislation / strategies and support their integration at national level;3. To build capacities and empower rare disease patients advocates, members and volunteers;4. To sustain human, financial and organisational resources. EURORDIS achieves these objectives through the following activities: collecting data as well as gathering, disseminating and sharing information; support capacity-building to empower patients’ advocates; providing patients, families, carers, decision-makers and other stakeholders with relevant expertise to inform policy-making; generating EU added-value and support Member States efforts; promoting translational research towards therapeutic intervention for patients; serving as a relay of two-ways information flow between policy makers and rare disease patient groups; promoting access to high quality and safe healthcare services for rare disease patients throughout the EU. Through these activities, EURORDIS will contribute to the implementation of the priorities of the Third Public Health Programme which are to complement, add value and support national policies and strategies implemented by Member States to improve health, reduce health inequalities, support health capacity-building, generate and disseminate health information, contribute to innovative, efficient and sustainable health systems, support cross border healthcare in order to facilitate access to better and safer healthcare.
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The EURORDIS Specific Grant Agreement 2016 continues the work of SGA 2015 within the overarching Framework Partnership Agreement 2015-2017. EURORDIS main strategic objectives are to consolidate the Rare Disease patient’s community and strengthen the rare disease patients’ voice; to actively engage rare disease patient representatives to contribute to the adoption, effective implementation and monitoring of relevant EU legislation/strategies and support their integration at national level; to build capacities and empower rare disease patients advocates, members and volunteers;to sustain human, financial and organisational resources. All activities within the SGA 2016 work to this effect.
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The European Organisation for Rare Diseases (EURORDIS) is the voice of 30 million people affected by rare diseases throughout Europe.

EURORDIS is a non-governmental patient-driven alliance of organisations and individuals active in the field of rare diseases in Europe.

EURORDIS represents 716 rare disease patient organisations in 63 countries out of which 27 EU member states, covering more than 4000 rare diseases and rare cancers.

EURORDIS advocates for people living with rare diseases, fosters patient engagement in Commission Expert Groups, at the European Medicines Agency and EUnetHTA, provides services to patients such as information, networking and capacity building on all aspects of their condition such as therapeutic developments, access to medicines, social services and healthcare. This is done through tools such as the eurordis.org website, Summer School, Rare Disease Day, RareConnect.org , the survey programme Rare Barometer Voices, Rare Diseases International and the European Conference on Rare Diseases & Orphan Products.

The EURORDIS Specific Grant Agreement 2017 continues the work of SGA 2016 within the overarching Framework Partnership Agreement 2015-2017. This grant's main strategic objectives are to consolidate the rare disease patient community and strengthen the voice of rare disease patients; to actively engage rare disease patient representatives to contribute to the adoption, effective implementation and monitoring of relevant EU legislation/strategies and support their integration at national level; to build capacities and empower rare disease patients advocates, members and volunteers; to sustain human, financial and organisational resources.

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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 2018 (THALIA2018) 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.
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The EURORDIS Specific Grant Agreement 2018 is the first SGA within the overarching Framework Partnership Agreement 2018-2021. EURORDIS main strategic objectives are to consolidate the Rare Disease patient’s
community and strengthen the rare disease patients’ voice; to actively engage rare disease patient representatives into the effective implementation and monitoring of relevant legislation/strategies; to build capacities and empower rare disease patients advocates, members and volunteers; to sustain human, financial and organisational resources. All activities within the SGA 2018 work to this effect.
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