2025/2130(INL)
EU rare disease action plan
Basic information
2025/2130(INL)
INL - Legislative initiative procedure
Subject
4.20.05 Health legislation and policy
Status
Awaiting committee decision
Key players
-
European Parliament
Committee responsible Rapporteur Appointed SANTGONZÁLEZ CASARES Nicolás (S&D)
10/09/2025
Committee for opinion on the legal basis Rapporteur for opinion Appointed JURI -
European Commission
Commission DG Commissioner Health and Food Safety VÁRHELYI Olivér
Key events
| Date | Event | Reference | Summary |
|---|---|---|---|
| 10/07/2025 | Committee referral announced in Parliament | ||
| 28/09/2026 | Vote in committee |
Forecasts
| Date | Subject |
|---|---|
| 14/12/2026 | Indicative plenary sitting date |
Technical information
| Procedure reference | 2025/2130(INL) |
|---|---|
| Procedure type | INL - Legislative initiative procedure |
| Procedure subtype | Request for legislative proposal |
| Legal basis | Rules of Procedure EP 47 |
| Other legal basis | Rules of Procedure EP 165 |
| Stage reached in procedure | Awaiting committee decision |
| Committee dossier |
SANT/10/03248
|
Documentation gateway
Additional information
| Source | Document | Date |
|---|---|---|
| European Commission | EUR-Lex |
Transparency
Meetings with interest representatives published in line with the Rules of Procedure
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Name Role Committee Date Interest representatives NEVADO DEL CAMPO Elena Shadow rapporteur SANT 16/10/2026 Fondazione Telethon ETS KELLEHER Billy Shadow rapporteur SANT 30/06/2026 GSK NEVADO DEL CAMPO Elena Shadow rapporteur SANT 09/06/2026 European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria GONZÁLEZ CASARES Nicolás Rapporteur SANT 22/04/2026 Grifols, S.A. GONZÁLEZ CASARES Nicolás Rapporteur SANT 22/04/2026 European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria KELLEHER Billy Shadow rapporteur SANT 21/04/2026 European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria NEVADO DEL CAMPO Elena Shadow rapporteur SANT 21/04/2026 Children’s Eye Health Coalition NEVADO DEL CAMPO Elena Shadow rapporteur SANT 08/04/2026 Biogen GONZÁLEZ CASARES Nicolás Rapporteur SANT 07/04/2026 European Patient Organisation for Dysimmune and Inflammatory Neuropathies GONZÁLEZ CASARES Nicolás Rapporteur SANT 02/04/2026 EUROPEAN ORGANISATION FOR RARE DISEASES
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Name Date Interest representatives KELLEHER Billy 24/06/2026 Merck Sharp & Dohme Europe Belgium SRL SOKOL Tomislav 02/06/2026 Screen4Rare PAPANDREOU Nikos 29/04/2026 EUCOPE SOKOL Tomislav 16/04/2026 Children's eye health coalition SOKOL Tomislav 08/04/2026 Zebra Diagnosis Coalition NEVADO DEL CAMPO Elena 08/04/2026 Zebra Diagnosis Coalition