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.
NGO · Spain
NGO · Belgium
Declared costs: not declared · in the register since 2017
Revision of the EU legislation on medicines for children and rare diseases · EU’s next long-term budget (MFF) – performance of the EU budget
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.
Asociación Hipofam · filed 26 Dec 2020 · source
Since Hipofam, we welcome the proposed changes and the willingness to improve access to and development of medicines for paediatric patients, and thus how improvements to the system of incentives for medicines for rare diseases. Although inclusion and reimbursement fall within the competence of the States, measures to improve fairness in access across the EU should be considered.
Filed in Spanish · English published by the European Commission
KickCancer · filed 6 Jan 2021 · source
KickCancer is a Belgian foundation with the mission to improve the survival chances of children with cancer, to reduce the toxicity of treatments and thereby restoring them to their full health after treatment. KickCancer was founded after the difficult experience of its founders, the parents, the step-father and one uncle of a 12-year-old boy who relapsed from an aggressive rhabdomyosarcoma subtype.
KickCancer · filed 7 Nov 2025 · source
KickCancer, a Belgian foundation financing research in paediatric oncology and a member of Childhood Cancer International Europe (CCI Europe), welcomes the European Commissions efforts to simplify and strengthen the EU budget performance framework. Simplification is necessary, but it must not come at the cost of visibility for high-impact areas that represent the EUs greatest added value.
Asociación Hipofam · filed 12 Nov 2025 · source
1Health as an EU priority The best way to safeguard public health is through a dedicated health programme at European level, with protected funding and building on the achievements of the EU4Health programme. 2. Integrating health and rare diseases into the ECF The European Competitiveness Fund (ECF) should explicitly include and adequately support public health and rare disease actions.
Filed in Spanish · English published by the European Commission
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