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Compare organizations

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.

RCE
Rare Cancers Europe

Other · Switzerland

3
files engaged
of 583 tracked
3
positions filed
in those 583 files
declared FTE
self-declared
EP accreditations
as declared to the register
EFP
EFPIA

Industry association · Belgium

35
files engaged
of 583 tracked
49
positions filed
in those 583 files
13.4
declared FTE
self-declared
13
EP accreditations
as declared to the register

Declared costs: €6M+ a year · in the register since 2009

Files both filed on (3)

Medicinal products for human use · 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.

What each said, in their own words

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.

Medicinal products for human use

Rare Cancers Europe · filed 27 Apr 2021 · source

Rare Cancers Europe (RCE), a 40-partner strong multi-stakeholder partnership, welcomes the consultation and would like to emphasise the following: 1. Ensure access: • HTA: RCE encourages the harmonisation of HTA processes and to ensure the concept of joint clinical assessments, to avoid the duplication of clinical assessments at national level, as foreseen by the draft HTA regulation.

EFPIA · filed 27 Apr 2021 · source

EFPIA supports an agile regulatory framework and a strong incentives’ system that embrace and encourage advances in science, technology & medicines. This evaluation is an opportunity to implement learnings from COVID-19 and ensure a competitive, world-class regulatory system in Europe supporting a globally competitive research-based industry at a critical time.

EFPIA · filed 3 Oct 2023 · source

EFPIA supports the objectives of enhancing the availability and accessibility of medicines, while fostering a competitive innovation environment in Europe. We welcome the proposal to future-proof the EU regulatory framework, maximising the use of expedited pathways, optimising regulatory decision-making processes, and reducing unnecessary administrative burdens.

EFPIA · filed 9 Oct 2023 · source

EFPIA supports the objectives of enhancing the availability and accessibility of medicines, while fostering a competitive innovation environment in Europe. We welcome the proposal to future-proof the EU regulatory framework, maximising the use of expedited pathways, optimising regulatory decision-making processes, and reducing unnecessary administrative burdens.

A European Health Data Space

Rare Cancers Europe · filed 3 Feb 2021 · source

Rare Cancers Europe (RCE), a 40-partner strong multi-stakeholder partnership, welcomes the EU efforts towards the creation of a European Health Data Space (EHDS). Rare cancers are a neglected area deserving dedicated attention as 24% of all new cancer diagnoses, including all paediatric cancers, are rare.

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…

Revision of the EU legislation on medicines for children and rare diseases

Rare Cancers Europe · filed 6 Jan 2021 · source

Rare Cancers Europe (RCE), a 39 partner strong multi-stakeholder partnership, welcomes the EU efforts to assessing solutions to improve the legislative environment on medicines for rare diseases, including rare cancers. With more than 20% of all new cancer cases being rare, including all paediatric cancers, rare cancers belong to both cancers and rare diseases.

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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