NGO · France · EU Transparency Register 879970415784-92
Counts here are a floor, never a total: they cover the 326 consultation files tracked so far (29,503 submissions, mostly 2025–26), so an organization's real filing history is larger, not smaller.
Among the 784 non-governmental organisations on this site, they rank #236 by legislative files engaged — a count of participation, not a measure of influence.
Self-declared to the EU Transparency Register (snapshot 30 Aug 2026).
Self-declared to the EU Transparency Register (snapshot 30 Aug 2026); cost bands are floors, not audited totals. Reused under Commission Decision 2011/833/EU.
Track Fondation in PolicySpeak: request access →
Work at Fondation Jérôme Lejeune? so we know who speaks for it.
Fondation Jérôme Lejeune filed 3 positions on 7 May 2026, across 3 of the 326 legislative files tracked here.
The FJL welcomes the Commission’s work to standardise health data set descriptions under the European Health Data Space. As an actor combining care, clinical research and the creation of longitudinal databases, particularly in the field of genetic diseases, we consider the quality of data descriptions to be a major lever for re-use, scientific reproducibility and the development of European and international…
Filed in French · English published by the European Commission
The FJL welcomes the development of [email removed] the continuity of care, this infrastructure represents a major strategic opportunity for European biomedical research. It should not be limited to a tool that distorts clinical data, but should be seen as a structuring lever for health research and innovation, within a framework that guarantees clear limits and the patient’s complete control over the use of his or…
Filed in French · English published by the European Commission
1. Introduction The Jérôme Lejeune Foundation welcomes the establishment of a European identification and interoperable authentication mechanism under the European Health Data Space (EHDS). As actors involved in the management and research of intellectual disabilities of genetic origin, we process particularly sensitive health data, often in cross-border contexts.
Filed in French · English published by the European Commission
Looking for an argument rather than an organization? Search every submission for a phrase and see everyone who used it.
Organizations that also filed on at least two of the same consultations. A shared interest in the same dossiers — not evidence of coordination, and we do not suggest any.
Showing 5 of 18.
Everything on this page comes from Fondation Jérôme Lejeune’s own submissions to the European Commission — we have added nothing and interpreted nothing. If something is wrong or out of date, email info@policyspeak.com and we will correct it. If you are an individual named in a record, our privacy policy sets out your rights to correction, objection and removal.
Quotes are verbatim from submissions published by the European Commission, trimmed to their opening passage and never summarized by a model. Organizations only, never individuals. Reused under Commission Decision 2011/833/EU; the European Commission is not liable for this reuse.