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Blog: World Down Syndrome Day - 21/03/2016

Met dank overgenomen van C.M.F. (Carlos) Moedas, gepubliceerd op dinsdag 22 maart 2016.

One year ago this same day, I had the pleasure of meeting Eléonore Laloux and Robin Sevette two amazing kids with Down Syndrome that I will never forget. Their smile and energy filled the room as I have never seen before.

I also met Alexandre Varaut the father of a great young boy. Together with other emotionally and professionally-invested individuals who attended the event at the European Parliament we discussed how the EU can help to go further in supporting and treating those with intellectual disabilities. The clear dedication of everyone involved in the discussion created a very powerful dynamic, making it both a moving and unique experience for all participants.

For some 4.2 million in Europe, as well as their families and carers, having an intellectual disability translates to a reduced quality of life. The challenge posed by intellectual disability is multifaceted, encompassing several sectors, such as care, education, employment and, more generally, social inclusion. The fight against intellectual disabilities is a priority for the EU in terms of both health policy and research and innovation. We are now focusing on creating the knowledge and innovation to solve problems, rather than simply investigating them.

Our brain is a source of emotions, behaviour and intellectual capacities, and understanding how it works is a real challenge. But we need to rise to that challenge, as such knowledge can open many doors. We need excellent research to better understand the problems and find the answers in order to empower people with intellectual disabilities to remain active, independent and fully engaged members of society.

Horizon 2020 (the current EU research and innovation funding programme) offers the right tools to develop new solutions for the benefit of all those in need, and calls for a new vision of health and wellbeing that emphasises the opportunities as well as the challenges. The Excellent Science priority of Horizon 2020 offers opportunities to support frontier research through the European Research Council (ERC), building on over 20 ERC grants and 45 Marie Skłodowska-Curie mobility grants in the area of research into intellectual disability that were already awarded under the previous research programme.

Horizon 2020 also offers reinforced opportunities for research and innovation for the private sector. The Innovative Medicines Initiative 2 - IMI2 - a public-private partnership between the European Commission and the pharmaceutical industry, aims at improving health by speeding up the development of, and patient access to, innovative medicines in many areas, including that of intellectual disabilities.

We need to encourage the development of more socially innovative services tailored to the needs of people affected by disabilities, and promote their participation in the labour market, and the social life of the community they are in. This is why research in the social sciences are so important - great research can observe, interpret and initiate discussions with all actors, including people with intellectual handicaps and their associations.

An important project which focuses on improving the quality of life of individuals with intellectual disabilities is ASSISTID. The programme will equip postdoctoral researchers with multidisciplinary skills to enable them to assume leadership roles in intellectual disability research.

Today I want to tell Eléonore and Robin that they are a great inspiration for all of us and always will be.


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