European Down Syndrome Association
Budget
€13,550
EP Access
0
accredited persons
Staff
3
0.7 FTE
EU Grants
€1,250
Mission & Goals
EDSA stands up (aim) for the dignity and quality of life of people with Down Syndrome by being and feeling included in the society. Based on the autonomy and self-determination of the person with the individual supports needed. Regardless of racial, linguistic, religious, philosophical, or political considerations. EDSA focuses to improve the health, and early assistance to achieve the complete development of people with Down syndrome. It also puts light on the right to decide and on inclusive education and employment.
EU Legislative Interests
The main EU legislative and policies targeted by EDSA are, for the moment: - EU Disability Strategy - Quality Jobs Act - Employment package - Education package - European Child Guarantee - EU healthcare
Communication Activities
Since the EU Coordinator role at EDSA has only been present since January of 2026, there have not been many events or publications created. The main event that EDSA is responsible for every 2 years is the organization of the World Down syndrome Day. EDSA is currently preparing for this event, after talking with MEP's Rosa Estaràs and Alex Agius Saliba, the date is to be confirmed for the 25th March. Other publications ongoing, linked to EU projects: - Independent living (ALI) (2023-2025) - Valueable network (2014-2026) - I learn and get beyond my limits LEBEL (2020-2022) - Gene overdosage and comorbidities during the early lifetime in Down Syndrome Funded under (H2020-EU.3.1.1. 2020-2024) - European Model of Inclusive Sport for People with Down Syndrome - EU JOIN US (2022-2024)
Interests Represented
Does not represent commercial interests
Member Of
EDSA is member of - the European Disability Forum (EDF). https://www.edf-feph.org/our-members/european-down-syndrom-association-edsa/ - Down Syndrome International (DSI). https://ds-int.org/network-member-organisations/ - T21RS https://www.t21rs.org/
Organisation Members
EDSA represents 35 countries and has 44 members. See the following: Albania Down Syndrome Albania Austria Down-Syndrom Österreich Belgium Down Syndrome Foundation Belgium Bosnia-Herzegowina Zivot Sa Down Sy Croatia Croatian Down Syndrome Association, Zagreb Czech Republic DownSyndrom CZ Denmark Landsforeningen Downs Syndrom France Trisomie 21 France France Association Française pour la recherche sur la Trisomie 21 (AFRT) Georgia Georgian Down Syndrome Association Germany Deutsches Down-Syndrom InfoCenter Greece Down Syndrome Association of Greece Hungary Down Association Hungary Hungarian Down Foundation Iceland Down Syndrome Iceland Ireland Down Syndrome Ireland Italy Associazione Italiana Persone Down Italy CoorDown – Coordinamento Nazionale Associazioni delle persone con sindrome di Down Kosovo Down Syndrome Association of Kosova Luxembourg Trisomie 21 Macedonia Down Syndrome Center Malta Down Syndrome Association Malta Moldova Asociația Obștească Prietena Mea the Netherlands Stichting Downsyndroom (SDS) Norway Downs Syndrom Norge (DSN) Poland Fundacja Wspierania Rozwoju JA TEZ Portugal Associação Portuguesa de Portadores de Trissomia 21 Portugal PAIS 21 Romania Asociatia Langown Down Oltenia Centrul Educational Teodora (ALDO-CET) Russia Downs Syndrome Diamond Foundation Limited Scotland Down’s Syndrome Scotland Slovakia Spoločnosť Downovho syndrómu na Slovensku Slovenia DDSS Društo Downow sindrom Slovenija Spain Asociación Síndrome de Down de Baleares (ASNIMO) Spain Fundació Catalana Síndrome de Down Spain Down España Sweden Svenska Downföreningen Switzerland Association Romande Trisomie 21 Switzerland Associazione Progetto Avventuno Switzerland insieme 21 Turkey Down Sendromu Derneği Ukraine Ukrainian Down Syndrome Organization United Kingdom Down Syndrome Education International (DownsEd) United Kingdom Down’s Syndrome Association Link to website: https://edsa.eu/members-3/ EDSA has a partnership collaboration with Inclusion Europe. Link: https://www.inclusion.eu/european-organisations-join-forces-for-better-participation-of-people-with-disabilities-in-eu-policy-making
Additional Information
The EU coordinator is payed in a collaboration partnership with Inclusion Europe (from 2026-2028). EDSA contributes with an amount of 6.000€.
Commissioner Meetings
No recorded meetings with EU commissioners.