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Eurordis - Rare Disease Europe

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Latest Resources

Joint statement on the European Health Data Space Draft ProposalJoint statement on the European Health Data Space Draft Proposalmars 2023Read More
Become a Parliamentary Advocate for Rare DiseasesBecome a Parliamentary Advocate for Rare Diseasesmars 2023Read More
Patient-clinician reflection sessionsPatient-clinician reflection sessionsfévrier 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 – Infographicfévrier 2023Read More

Annual Reports

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All-ePAG meeting 2022All-ePAG meeting 2022décembre 2022Download
EURORDIS Financial Report 2021EURORDIS Financial Report 2021mai 2022Download
EURORDIS Activity report 2021EURORDIS Activity report 2021mai 2022Download
EURORDIS Financial Report 2020EURORDIS Financial Report 2020juin 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 settingnovembre 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 casesseptembre 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 Adolescentsseptembre 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 Europeaoût 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 – Infographicfévrier 2023Read More
Why we need European action on rare disease!Why we need European action on rare disease!mai 2021Read More
Community Advisory Boards – Early SuccessesCommunity Advisory Boards – Early Successesjanvier 2021Read More
How has COVID-19 impacted people with rare diseases?How has COVID-19 impacted people with rare diseases?octobre 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 industryjanvier 2023Read More
A EURORDIS report from the High-level Ministerial Conference on Rare DiseasesA EURORDIS report from the High-level Ministerial Conference on Rare Diseasesmars 2022Read More
Recommendations from the Rare 2030 foresight studyRecommendations from the Rare 2030 foresight studyfévrier 2021Read More
ECRD 2020 Executive SummaryECRD 2020 Executive Summarynovembre 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 Proposalmars 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 Regulationnovembre 2022Read More
EURORDIS’ Position on the European Health Data SpaceEURORDIS’ Position on the European Health Data Spaceoctobre 2022Read More
EFPIA-EURORDIS Joint Statement on Patient Access to Medicines for Rare DiseasesEFPIA-EURORDIS Joint Statement on Patient Access to Medicines for Rare Diseasesjuin 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)janvier 2023Read More
34th Workshop of the EURORDIS Round Table of Companies (ERTC)34th Workshop of the EURORDIS Round Table of Companies (ERTC)août 2022Read More
ERTC Code of ConductERTC Code of Conductjuillet 2022Download
33rd EURORDIS Round Table of Companies Workshop33rd EURORDIS Round Table of Companies Workshopmai 2022Read More

Living with a rare disease

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#Resolution4Rare : campagne mondiale pour une première Résolution de l’ONU sur les personnes atteintes de maladie raremai 2021Visit story
Carpe diem : l’histoire de Noémie, qui vit avec une sclérose latérale amyotrophique (SLA)juin 2019Visit story
Carpe diem : l’histoire de Noémie, qui vit avec une sclérose latérale amyotrophique (SLA)juin 2019Visit story
L’histoire de Steven : ou comment vivre avec une adrénoleucodystrophiejanvier 2019Visit story