Across Europe, organisations supporting people with Down syndrome are carrying out vital work in very different national contexts. One of EDSA’s core roles is to make this work visible, not only to recognise its impact, but to help organisations learn from one another. This is the purpose behind EDSA Spotlight, a new webinar series dedicated to exploring the work, structure, and approaches of individual member organisations.
The first EDSA Spotlight talk featured Down España, Spain’s national federation of Down syndrome organisations. The session was led by José Gutiérrez, Program Manager at Down España and Vice President of EDSA, who shared an in depth overview of how the federation operates and the principles guiding its work
Founded in 1991 by families, Down España today brings together 92 member organisations and represents around 11,000 families. Its federative model places families at the centre of governance while relying on professional staff and national thematic networks to develop and implement programmes. These networks cover the full life course, including early intervention, inclusive education, supported employment, health, independent living, ageing, and rights advocacy.
A key theme of the talk was how collaboration and structure allow the federation to reach both large and small organisations across Spain. José highlighted the importance of listening to people with Down syndrome and their families, building strong national and international networks, and remaining open to innovation. One example is Minerva, an upcoming AI based virtual assistant designed to provide accessible, trustworthy information on Down syndrome to families, professionals, and institutions.
EDSA Spotlight is designed as a space for curiosity and exchange. By sharing detailed national experiences like that of Down España, the series aims to strengthen connections across the EDSA network and support a culture of openness, learning, and collaboration. Future Spotlight talks will continue to highlight the diversity of work happening across Europe and the shared challenges organisations face.
Thank you to José Gutiérrez and Down España
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