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.
Company · United States
Declared costs: €200K+ a year · in the register since 2016
NGO · Germany
Declared costs: not declared · in the register since 2008
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.
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.
Deutsche Sozialversicherung Europavertretung · filed 27 Apr 2021 · source
Health systems in the EU face the challenge of ensuring a high quality of affordable supply of medicines in the face of high prices. The German Social Insurance Agency therefore welcomes the EU’s intention to revise European pharmaceutical legislation.
Filed in German · English published by the European Commission
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.
Deutsche Sozialversicherung Europavertretung · filed 2 Nov 2023 · source
The German Social Insurance Board (DSV) welcomes the Commission’s objectives of the reform proposals. They provide an opportunity to ensure equal access to medicines for patients in all Member States and to strengthen the security of supply of medicines as well as the adequacy of existing incentive schemes for drug development.
Filed in German · English published by the European Commission
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…
Deutsche Sozialversicherung Europavertretung · filed 4 Jan 2021 · source
The German social security umbrella organisations in Germany welcome the plan to revise the existing incentive schemes for orphan medicinal products and paediatric medicinal products and agrees with the European Commission that the aim of this revision must be to: (1) focus support on areas where the regulations have not shown the desired success; (2) end support for areas where it is not necessary; (3) link funding…
Filed in German · English published by the European Commission
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