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2025/2130(INL) Legislative initiative First reading

EU rare disease action plan

Parliament asks the Commission to propose a law and says what it should contain.

Where it stands: The committee adopted its report on 28 September 2026; it goes to plenary next.

  1. ✓ Referred to committee 10 July 2025
  2. ✓ Committee work Report adopted 28 September 2026
  3. 3 Tabled for plenary
  4. 4 Plenary vote
  5. 5 Parliament’s position
How a file moves through Parliament

A file is referred to one lead committee (others may give an opinion). Its rapporteur writes a draft report, committee members table amendments, and the committee votes to adopt the report. The report is then tabled for all MEPs; political groups can table further amendments, which are voted on before the final vote in plenary. The adopted resolution is Parliament’s final position; it is not itself law.

Who is working on it

Lead committee
SANT — Public Health
Rapporteur
Nicolás GONZÁLEZ CASARES S&D
Shadow rapporteurs
Elena NEVADO DEL CAMPO PPEMarie-Luce BRASIER-CLAIN PfEEmmanouil FRAGKOS ECRBilly KELLEHER RenewNicolae ȘTEFĂNUȚĂ Verts/ALEGiorgos GEORGIOU The LeftChristine ANDERSON ESN

The rapporteur drafts and negotiates the text for the lead committee; each other political group names a shadow rapporteur to follow the file.

The text, version by version

Committee draft · latest Draft report (SANT) 2 March 2026 ✦ This is a draft report by the Committee on Public Health, with recommendations to the Commission on a European Union rare disease action plan. It calls for a comprehensive Union action plan and proposes a Regulation establishing a European rare disease action framework.

Newest version first. Open a version to read it in full. “What changed” shows the differences paragraph by paragraph; ✦ lines are AI-written from the texts themselves.

Timeline

  1. Committee stage
  2. 28 September 2026 Committee vote: report adopted

    SANT (Public Health) voted on the amendments and adopted the report that goes to plenary.

  3. 27 March 2026 Amendments tabled in committee (2 batches)

    Members of SANT (Public Health) proposed changes to the draft.

    📄 Amendments in committee (SANT)📄 Amendments in committee (SANT)
  4. 2 March 2026 Draft report published

    The rapporteur’s first text in SANT (Public Health). Members can table amendments before the committee votes.

    📄 Draft report (SANT)
  5. 10 July 2025 Referred to the SANT (Public Health) committee

    The lead committee prepares Parliament’s report.