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Latest Resources

Have your say: Help shape the future of rare disease policy in EuropeHave your say: Help shape the future of rare disease policy in EuropeMarch 2025Read More
Assessing Patient Partnership Implementation in the ERNsAssessing Patient Partnership Implementation in the ERNsMarch 2025Read More
Recognising disabilities and barriers!Recognising disabilities and barriers!February 2025Read More
Supporting the continuous development and use of a patient partnership framework in European rare disease networks (ERNs): a scoping review of frameworks in the scientific literatureSupporting the continuous development and use of a patient partnership framework in European rare disease networks (ERNs): a scoping review of frameworks in the scientific literatureFebruary 2025Download

Annual Reports & Work Programmes

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Financial Report 2023Financial Report 2023May 2024Read More
EURORDIS Activity Report 2023EURORDIS Activity Report 2023May 2024Read More
EURORDIS Work Programme 2024EURORDIS Work Programme 2024May 2024Read More
EURORDIS Financial Report 2022EURORDIS Financial Report 2022May 2023Read More

Factsheets and infographics

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Experiences of people living with a rare disease with healthcare: a scoping review for the H-CARE projectExperiences of people living with a rare disease with healthcare: a scoping review for the H-CARE projectJanuary 2025Read More
Integrated care for rare diseases: Bridging the gap to improve the lives of 30 million people in EuropeIntegrated care for rare diseases: Bridging the gap to improve the lives of 30 million people in EuropeAugust 2024Read More
Guide to developing a Patient JourneyGuide to developing a Patient JourneyMarch 2024Read More
Patient Partnership Framework for ERNsPatient Partnership Framework for ERNsNovember 2023Read More

Other publications

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Experiences of people living with a rare disease with healthcare: a scoping review for the H-CARE projectExperiences of people living with a rare disease with healthcare: a scoping review for the H-CARE projectJanuary 2025Read More
12 Labours of ECRD12 Labours of ECRDMay 2024Read More
Letter: Mental health needs of people in vulnerable situationsLetter: Mental health needs of people in vulnerable situationsFebruary 2024Read More
Make Your Voice Heard! – Rare Barometer guideNovember 2023Read More

Position Papers

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Have your say: Help shape the future of rare disease policy in EuropeHave your say: Help shape the future of rare disease policy in EuropeMarch 2025Read More
EURORDIS Blueprint for Psychosocial CareEURORDIS Blueprint for Psychosocial CareJune 2024Read More
EURORDIS Executive Summary on Mental Health and WellbeingEURORDIS Executive Summary on Mental Health and WellbeingJune 2024Read More
EURORDIS Position Paper on Mental Health and WellbeingEURORDIS Position Paper on Mental Health and WellbeingJune 2024Read More

EURORDIS Events

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Frédérique Ries, MEP, on the Rare 2030 recommendations
Rare 2030 recommendations in focus
Andrzej Ryś, European Commission, on the Rare 2030 Recommendations
Avril Daly’s opening speech – EURORDIS Black Pearl Awards 2021

Living with a rare disease

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Carpe diem – Noémie’s story of living with amyotrophic lateral sclerosisJune 2019Visit story
Steven’s story: Living with adrenoleukodystrophyJanuary 2019Visit story
Borys’ story: Living with metachromatic leukodystrophyOctober 2018Visit story
Veronica’s story: Living with Allan-Herndon-Dudley SyndromeApril 2018Visit story

EURORDIS Round Table of Companies (ERTC)

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36th Workshop of the EURORDIS Round Table of Companies (ERTC)36th Workshop of the EURORDIS Round Table of Companies (ERTC)July 2023Read More
35th Workshop of the EURORDIS Round Table of Companies (ERTC)35th Workshop of the EURORDIS Round Table of Companies (ERTC)January 2023Read More
ERTC Code of ConductERTC Code of ConductJuly 2022Download
33rd EURORDIS Round Table of Companies Workshop33rd EURORDIS Round Table of Companies WorkshopMay 2022Read More

Webinars

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ERN 5-Yr Evaluation through the Patient-Lens Webinar
ePAG Exchange of Good Practices _ VASCERN Flowchart