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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.

PT
PTC Therapeutics

Company · United States

2
files engaged
of 583 tracked
3
positions filed
in those 583 files
0.5
declared FTE
self-declared
1
EP accreditations
as declared to the register

Declared costs: €200K+ a year · in the register since 2016

ERS
17
files engaged
of 583 tracked
19
positions filed
in those 583 files
3
declared FTE
self-declared
3
EP accreditations
as declared to the register

Declared costs: €300K+ a year · in the register since 2012

Files both filed on (2)

Medicinal products for human use · 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

European Respiratory Society · filed 27 Apr 2021 · source

ERS appreciates the opportunity to contribute to this roadmap on the revision of the General Pharmaceutical legislation (namely Directive 2001/83/EC1 and Regulation (EC) No 726/20042). Join the dots: Legislation must foster medical advancement not hamper it.

PTC Therapeutics · filed 26 Jun 2023 · source

PTC therapeutics agrees with the overall objectives of the proposed Pharmaceutical Package (proposed Regulation and Directive): As a company we are striving to develop therapies for people living with a rare disease and as such we want to contribute to creating an innovative and competitive EU healthcare ecosystem with standards that can compete at a global level.

PTC Therapeutics · filed 26 Jun 2023 · source

PTC therapeutics agrees with the overall objectives of the proposed Pharmaceutical Package (proposed Regulation and Directive): As a company we are striving to develop therapies for people living with a rare disease and as such we want to contribute to creating an innovative and competitive EU healthcare ecosystem with standards that can compete at a global level.

European Respiratory Society · filed 8 Nov 2023 · source

Answer to the request for feedback on the revision of the EU general pharmaceutical legislation The European Respiratory Society, (ERS) is one of the leading medical organisations in the respiratory field, with a growing membership spanning over 160 countries.

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

PTC Therapeutics · filed 7 Dec 2020 · source

The OMP Regulation was introduced to stimulate research in rare diseases. PTC Therapeutics believes the Regulation has been a successful European regulatory instrument as it not only led to an increase in the number of orphan drugs but also put a spotlight on the high unmet medical needs of rare disease patients.PTC recognised that after 20 years it is a good moment to take stock of the effectiveness of the…

European Respiratory Society · filed 6 Jan 2021 · source

The European respiratory Society (ERS) is an international organisation that brings together physicians, healthcare professionals, scientists and other experts working in respiratory medicine. It is one of the leading medical organisations in the respiratory field, with a growing membership representing over 160 countries worldwide.

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