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Latest Resources

Joint statement on the European Health Data Space Draft ProposalJoint statement on the European Health Data Space Draft Proposalmarzo 2023Read More
Become a Parliamentary Advocate for Rare DiseasesBecome a Parliamentary Advocate for Rare Diseasesmarzo 2023Read More
Patient-clinician reflection sessionsPatient-clinician reflection sessionsfebrero 2023Read More
Juggling care and daily life: The balancing act of the rare disease community – InfographicJuggling care and daily life: The balancing act of the rare disease community – Infographicfebrero 2023Read More

Annual Reports

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All-ePAG meeting 2022All-ePAG meeting 2022diciembre 2022Download
EURORDIS Financial Report 2021EURORDIS Financial Report 2021mayo 2022Download
EURORDIS Activity report 2021EURORDIS Activity report 2021mayo 2022Download
EURORDIS Financial Report 2020EURORDIS Financial Report 2020junio 2021Download

Scientific papers

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The use of real world data for regulatory purposes in the rare diseases settingThe use of real world data for regulatory purposes in the rare diseases settingnoviembre 2022Read more
Identifying obstacles hindering the conduct of academic‑sponsored trials for drug repurposing on rare‑diseases: an analysis of six use casesIdentifying obstacles hindering the conduct of academic‑sponsored trials for drug repurposing on rare‑diseases: an analysis of six use casesseptiembre 2022Read more
Paediatric Inflammatory Bowel Disease: A Multi-Stakeholder Perspective to Improve Development of Drugs for Children and AdolescentsPaediatric Inflammatory Bowel Disease: A Multi-Stakeholder Perspective to Improve Development of Drugs for Children and Adolescentsseptiembre 2022Read more
Contribution of patient registries to regulatory decision making on rare diseases medicinal products in EuropeContribution of patient registries to regulatory decision making on rare diseases medicinal products in Europeagosto 2022Read more

Factsheets and infographics

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Juggling care and daily life: The balancing act of the rare disease community – InfographicJuggling care and daily life: The balancing act of the rare disease community – Infographicfebrero 2023Read More
Why we need European action on rare disease!Why we need European action on rare disease!mayo 2021Read More
Community Advisory Boards – Early SuccessesCommunity Advisory Boards – Early Successesenero 2021Read More
How has COVID-19 impacted people with rare diseases?How has COVID-19 impacted people with rare diseases?octubre 2020Read More

Other publications

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Code of Practice between patient organisations and the healthcare industryCode of Practice between patient organisations and the healthcare industryenero 2023Read More
A EURORDIS report from the High-level Ministerial Conference on Rare DiseasesA EURORDIS report from the High-level Ministerial Conference on Rare Diseasesmarzo 2022Read More
Recommendations from the Rare 2030 foresight studyRecommendations from the Rare 2030 foresight studyfebrero 2021Read More
ECRD 2020 Executive SummaryECRD 2020 Executive Summarynoviembre 2020Read More

Position Papers

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Joint statement on the European Health Data Space Draft ProposalJoint statement on the European Health Data Space Draft Proposalmarzo 2023Read More
EURORDIS’ Proposal on the Revision of the Orphan Medicinal Products and Paediatric RegulationEURORDIS’ Proposal on the Revision of the Orphan Medicinal Products and Paediatric Regulationnoviembre 2022Read More
EURORDIS’ Position on the European Health Data SpaceEURORDIS’ Position on the European Health Data Spaceoctubre 2022Read More
EFPIA-EURORDIS Joint Statement on Patient Access to Medicines for Rare DiseasesEFPIA-EURORDIS Joint Statement on Patient Access to Medicines for Rare Diseasesjunio 2022Read More

EURORDIS Round Table of Companies (ERTC)

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35th Workshop of the EURORDIS Round Table of Companies (ERTC)35th Workshop of the EURORDIS Round Table of Companies (ERTC)enero 2023Read More
34th Workshop of the EURORDIS Round Table of Companies (ERTC)34th Workshop of the EURORDIS Round Table of Companies (ERTC)agosto 2022Read More
ERTC Code of ConductERTC Code of Conductjulio 2022Download
33rd EURORDIS Round Table of Companies Workshop33rd EURORDIS Round Table of Companies Workshopmayo 2022Read More

Living with a rare disease

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Carpe diem: la historia de Noémie con esclerosis lateral amiotróficajunio 2019Visit story
Carpe diem: la historia de Noémie con esclerosis lateral amiotróficajunio 2019Visit story
La historia de Steven: Viviendo con adrenoleucodistrofiaenero 2019Visit story
La historia de Borys: viviendo con leucodistrofia metacromáticaoctubre 2018Visit story