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: €6M+ a year · in the register since 2009
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
EFPIA · filed 3 Feb 2021 · source
EFPIA welcomes the proposal to create sectoral and horizontal legislative frameworks to unlock the value of data, support the use, re-use and exchange of health data at the EU level and ensure coherence between the operation of the different legislations contributing to the functioning of the Data Space.
EFPIA · filed 28 Jul 2022 · source
The legislative proposal on a European Health Data Space (EHDS) and respective horizontal proposals provide an unprecedented opportunity to shape the future health data and digital ecosystem. Digital transformation has the potential to increase the innovation and productivity of the EU economy and ensure that Europe remains an innovator and world leader in the development and manufacture of medicines, supporting…
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
EFPIA · filed 6 Jan 2021 · source
EFPIA members are committed to ensuring that unmet needs are addressed and that available treatments reach all European patients. Children and rare disease (RD) patients have greatly benefited from the progress achieved through the Paediatric and Orphan Regulations. The Paediatric Regulation is meeting best-case expectations from its impact assessment (IA) conducted in 2004.
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