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.
Other · Switzerland
NGO · Germany
Declared costs: not declared · in the register since 2008
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.
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.
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.
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
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
Deutsche Sozialversicherung Europavertretung · filed 2 Feb 2021 · source
The German social security umbrella organisations welcome the European Commission’s intention to shape a European health data space, in particular by: — a more binding cooperation between Member States to improve the availability and interoperability of health data with added value for patients; and — the creation of institutionalised data Governance Structure, research and development of innovation and the…
Filed in German · English published by the European Commission
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.
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
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.
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