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Parliamentary questions
22 May 2018
E-002721-18
Question for written answer
to the Commission
Rule 130
Marijana Petir (PPE)

 Subject:  Funding research programmes on Down syndrome

Down syndrome (DS) is the most common chromosomal cause of intellectual disability, affecting more than 500 000 people in Europe. It is more common than cystic fibrosis, muscular dystrophy and Huntington’s disease combined.

Given that it is a lifelong condition, even small improvements in functional abilities or reduction in co-morbidities such as dementia would have a significant impact on the associated care burden and costs. Despite these facts, the European Commission and private organisations have devoted less than EUR 15 million to DS research programmes.

Moreover, the EU programmes have focused only on the genetic causes of DS (EUR 6.6 million) and on the social and educational aspects (EUR 3.56 million). None of them have focused on research leading to the development of pharmacological or clinical trials.

As EU calls for funding concentrate on diseases with a high prevalence (such as diabetes or cancer) or a very low prevalence (rare diseases), projects devoted to DS or other genetic types of intellectual disability are excluded from funding, as such conditions are perceived to be neither common nor rare enough to qualify for most of the EU funding calls.

Will the Commission change its approach towards research programmes on DS?

Will the Commission explicitly incorporate genetic intellectual disabilities, including DS, within the Ninth Framework Programme for 2021-2027?

Last updated: 6 June 2018Legal notice