The Special Olympics EU Eurasia Foundation (SOEEF) is dedicated to providing critical services to children and adults with intellectual disabilities through ongoing training and competition, physical activities, inclusive sport, social inclusive initiatives and health services in all 28 Member States. The objectives are to offer quality training, competition, health screenings, and ongoing inclusive opportunities to athletes to maximize individual athlete potential, promote health and a healthy lifestyle both in sport and daily life, whilst reducing health inequalities and improving access to quality health services for people with intellectual disabilities.
In summary we can point out that people with intellectual disabilities have a wide range of chronic and acute health issues and conditions. In many instances, more frequent and severe symptoms than the general population; are twice as likely to have significant visual problems and at much younger age; are hardly ever engaged in vigorous physical activity and find it difficult to make themselves understood when speaking with health professionals; health conditions are may be similar to the general population, the impacts can be greater on those with ID; Experience higher mortality rates as a result of higher rates of cardiovascular diseases. Special Olympics EU Eurasia and its partner national programs provides its service to almost half a million individuals with intellectual disabilities across the EU driven mainly by volunteers.
The Healthy Athletes (HA) program provides access to health care for SO Athletes not only to improve their ability to improve health and fitness levels or to train and compete in SO events, but also to identify health care needs and to improve quality of health care for people with intellectual disabilities. The integrated health and physical activity action plan improves public health and reduces health inequalities of people with intellectual disabilities.
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ERN-ITHACA seeks to provide a patient centred network which will meet the needs of those with rare congenital malformation and intellectual disability syndromes , both diagnosed and undiagnosed. We will provide an infrastructure for diagnosis, evidence-based management and collection of secure patient data. Working with patients, Members of the network will share best practice and disseminate guidlines to optimise and improve coordination of patient care. We will facilitate training, and capacity building in field, be active and collaborative researchers and work towards development of diagnostic tests and future therapies.
ERN-ITHACA will comprise initially of 38 partner centres from 14 different EU Member States, led from the Central Manchester University Hospitals NHS Trust. In partnership with professionals, and also represented on the Board, there will be patient and lay members. We will work together, using innovative approaches such as TeleHealth to improve lives for patients with rare malformations and Intellectual disability syndromes. Our work plan will be organised into discrete packages, each with professional and patient leads. The network will be led by a network coordinator and managed by a designated project manager who will also be involved in coordination, monitoring, and dissemination. The lead organisation will oversee financial management. The network will be governed by a Board who in turn will be assisted by an independent steering group . We will include other centres as associates, working with them so that they can become affiliate centres in due course. In this way we will add value to the policies of Member States aiming to improve people’s health, reduce health inequalities, encourage innovation in healthcare, increase the sustainability of healthcare systems and protect EU citizens from serious cross-border health threats.
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Birth defects may result in death, chronic illness or long term disability with a significant impact on individuals, families, health care systems and societies. Many birth defects are also associated with intellectual disability as part of rarer patterns or syndromes and require multidisciplinary care. More than 8000 rare syndromes have been described. Thus although rare these are collectively important conditions. They may have genetic, environmental and multifactorial causes but in 50% of cases the cause is currently unknown. Identifying causes and studying the natural history of multiple anomaly syndromes guides management or treatment, provides answers for families and healthcare professionals, furthers understanding of normal development through research and may lead to prevention. All of these will have significant health economic benefits and guide commissioning of future services. However, expertise in the study of these conditions is limited to a few experts, in major healthcare centres. In some EU member states the specialty of syndrome diagnosis and management is not well established, there is no specialist training and there are few clinical and laboratory resources. We propose to establish a patient-centred European Reference Network for Rare Malformations and Intellectual Disability, ITHACA, which aims to meet the needs of patients, both diagnosed and undiagnosed. ITHACA will improve access to diagnostic expertise by utilizing an innovative telehealth approach and guiding quality assured diagnostic testing. For diagnosed patients, the network will gather high quality information in patient registries, facilitating development of evidence-based guidelines, currently lacking for many rare multiple anomaly syndromes. Registries will enable rapid identification of patient cohorts for research and clinical trials. They will be used to define patient outcome measures and key performance indicators which will be used to evaluate the network's success.
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