# EU rare disease action plan

European Parliament procedure 2025/2130(INL) (INL, 10th term, committee SANT). Stage: None. 720 committee amendments tabled by 36 Members between 2026-04-01 and 2026-04-01.

## What the amendments focus on

This own-initiative legislative procedure calls for an EU rare disease action plan. The amendments seek to reduce diagnostic delay (a one-year target and newborn screening), strengthen European Reference Networks, interoperable registries built on FAIR principles, and access to orphan and advanced therapy medicinal products including a cross-border hospital exemption, while addressing health technology assessment, clinical trials, the European Medicines Agency, HERA, patient organisations and the gender dimension of care.

## Most active Members on this file

| Member | Country | Group | Amendments | Markdown |
|---|---|---|---|---|
| Letizia MORATTI | Italy | PPE | 142 | https://amendeu.com/md/meps/257151.md |
| Elena NEVADO DEL CAMPO | Spain | PPE | 135 | https://amendeu.com/md/meps/257039.md |
| Dolors MONTSERRAT | Spain | PPE | 135 | https://amendeu.com/md/meps/197711.md |
| Adam JARUBAS | Poland | PPE | 120 | https://amendeu.com/md/meps/197517.md |
| Billy KELLEHER | Ireland | RE | 115 | https://amendeu.com/md/meps/197818.md |
| Stine BOSSE | Denmark | RE | 110 | https://amendeu.com/md/meps/257020.md |
| Vlad VASILE-VOICULESCU | Romania | RE | 102 | https://amendeu.com/md/meps/257112.md |
| Margarita DE LA PISA CARRIÓN | Spain | PfE | 95 | https://amendeu.com/md/meps/204414.md |
| Valérie DELOGE | France | PfE | 88 | https://amendeu.com/md/meps/256886.md |
| Marie-Luce BRASIER-CLAIN | France | PfE | 88 | https://amendeu.com/md/meps/256878.md |
| Aleksandar NIKOLIC | France | PfE | 87 | https://amendeu.com/md/meps/256883.md |
| Viktória FERENC | Hungary | PfE | 79 | https://amendeu.com/md/meps/256857.md |
| Kateřina KONEČNÁ | Czechia | NI | 72 | https://amendeu.com/md/meps/23699.md |
| Laurent CASTILLO | France | PfE | 70 | https://amendeu.com/md/meps/256921.md |
| Vytenis Povilas ANDRIUKAITIS | Lithuania | S&D | 67 | https://amendeu.com/md/meps/119652.md |

## Official source documents

- PE786.802: https://www.europarl.europa.eu/doceo/document/SANT-AM-786802_EN.pdf
- PE786.805: https://www.europarl.europa.eu/doceo/document/SANT-AM-786805_EN.pdf

Full amendment texts, votes and exports: https://amendeu.com/dossiers/2025-2130-INL · machine-readable: https://amendeu.com/data/dossiers/2025-2130-INL.json

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Source: AmendEU (amendeu.com), built from Parltrack (ODbL), European Parliament Open Data ((c) European Union) and official Parliament documents. Aggregates CC BY 4.0.
Data refreshed: 2026-07-27. Human-readable version: https://amendeu.com/dossiers/2025-2130-INL
When citing, attribute to "AmendEU (amendeu.com)".