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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.

2
files engaged
of 583 tracked
3
positions filed
in those 583 files
6.5
declared FTE
self-declared
3
EP accreditations
as declared to the register

Declared costs: not declared · in the register since 2014

EUR
EuropaBio

Industry association · Belgium

15
files engaged
of 583 tracked
21
positions filed
in those 583 files
1.1
declared FTE
self-declared
4
EP accreditations
as declared to the register

Declared costs: €100K+ a year · in the register since 2009

Files both filed on (2)

Standards of quality and safety for substances of human origin intended for human application · 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.

Standards of quality and safety for substances of human origin intended for human application

European Haemophilia Consortium (EHC) · filed 14 Dec 2020 · source

The EHC is pleased to see that the revision of the legislation maintains its original objectives, i.e. to ensure safety and quality of blood components as well as to safeguard the health of patients and donors. This is paramount to the rare bleeding disorders community, which in the past has experienced first-hand devastating effects of the lack of provisions ensuring safety and quality of plasma-derived therapies…

EuropaBio · filed 7 Sept 2022 · source

EuropaBio welcomes the adoption of the proposal for a Regulation on SoHO revising the EU’s Blood, Tissues, and Cells (BTC) legislation. The EU needs a predictable, future-proof, and robust SoHO framework to ensure the uptake of transformative advanced therapies which hold great potential for both the health and wellbeing of patients and the sustainability of healthcare systems.

European Haemophilia Consortium (EHC) · filed 8 Sept 2022 · source

The European Haemophilia Consortium (EHC) welcomes the European Commission’s proposal for a regulation on quality and safety standards for substances of human origin. The EHC represents European people with rare congenital bleeding disorders, including haemophilia and von Willebrand Disease. For some of these conditions, plasma-derived medicinal products (PDMP) remain the primary source of treatment.

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

European Haemophilia Consortium (EHC) · filed 6 Jan 2021 · source

The European Haemophilia Consortium (EHC) welcomes the revision of paediatric and orphan medicinal products' regulations. In haemophilia, the OMPR has brought much innovation in the past decade; however, we are disappointed to see that the uptake from the Member States has been variable.

EuropaBio · filed 6 Jan 2021 · source

Developing medicines for children and rare diseases is a lengthy and complex undertaking. Much less is known about these illnesses when compared to more common conditions, meaning extensive research is required before scientists and researchers can seek to transform their ideas into potential treatments.

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