Side by side
Consultation participation and their own register declarations, side by side. Counts, not judgments — participation is not influence.
Counts here are a floor, never a total: they cover the 583 consultation files tracked so far (42,224 submissions, mostly 2025–26), so an organization's real filing history is larger, not smaller.
NGO · Spain
Industry association · Belgium
Declared costs: €1.5M+ a year · in the register since 2008
A European Health Data Space · Revision of the EU legislation on medicines for children and rare diseases
Register facts self-declared (snapshot 2 Sept 2026); cost bands are floors. Shared files are shared attention, not evidence of coordination.
Their opening passages on the files they share, verbatim and in filing order. We do not summarize, compare, or characterize positions — read them at source.
Federación Española de Enfermedades Raras · filed 3 Feb 2021 · source
The Spanish Federation of Rare Diseases (ERDF), aligned with the European Alliance representing these diseases (EURORDIS), welcomes this consultation, recognising first of all the opportunity of this review for research and addressing this group.
Filed in Spanish · English published by the European Commission
American Chamber of Commerce to the EU · filed 3 Feb 2021 · source
The American Chamber of Commerce to the European Union (AmCham EU) shares the European Commission’s view that EU-level action is required to address the fragmented environment of European health data, the lack of data available for (re-)use in scientific research and the need for increased uniformity in Member States’ applications of data regulations.
American Chamber of Commerce to the EU · filed 18 Jul 2022 · source
AmCham EU speaks for American companies committed to Europe on trade, investment and competitiveness issues. It aims to ensure a growth-orientated business and investment climate in Europe. AmCham EU facilitates the resolution of transatlantic issues that impact business and plays a role in creating better understanding of EU and US positions on business matters.
American Chamber of Commerce to the EU · filed 27 Jul 2022 · source
EuropaBio welcomes the European Commission’s bold ambition to make Europe the most competitive data economy globally. The power of data in the healthcare sphere is evident and realising the potential of healthcare data is a crucial step to ensure the EU is a leader in the development of next generational medicines.
Federación Española de Enfermedades Raras · filed 5 Jan 2021 · source
The Spanish Federation of Rare Diseases (ERDF) would like to welcome the revision of this legislation and the recognition of the problem, giving a very positive assessment of this initiative. In line with the contributions of the European Rare Diseases Alliance (EURORDIS), and based on the experience of our associative fabric, we identify it as a priority for this new European regulation on orphan medicinal products…
Filed in Spanish · English published by the European Commission
American Chamber of Commerce to the EU · filed 6 Jan 2021 · source
Representing American companies operating in the EU, AmCham EU is well aware of the differences and respective strengths of innovation ecosystems on both sides of the Atlantic. The options laid out in the inception impact assessment (IIA) risk undermining an EU framework that has proven largely successful, rather than preserving the EU’s strengths and incorporating learnings from other regions.
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