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Latest Resources

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 – InfographicFebruary 2023Read More
<strong>Vivre avec une maladie rare en  France – Aides et Prestations,  Les Cahiers d’Orphanet, Série Politique de santé, décembre 2022</strong>Vivre avec une maladie rare en  France – Aides et Prestations,  Les Cahiers d’Orphanet, Série Politique de santé, décembre 2022January 2023Download
EURORDIS submission to the European Commission’s call for evidence on the EU Disability CardEURORDIS submission to the European Commission’s call for evidence on the EU Disability CardJanuary 2023Read More
Report on rare diseases: a clinical perspectiveReport on rare diseases: a clinical perspectiveJanuary 2023Read More

Annual Report

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All-ePAG meeting 2022All-ePAG meeting 2022December 2022Download
EURORDIS Financial Report 2021EURORDIS Financial Report 2021May 2022Download
EURORDIS Activity report 2021EURORDIS Activity report 2021May 2022Download
EURORDIS Financial Report 2020EURORDIS Financial Report 2020June 2021Download

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 – InfographicFebruary 2023Read More
Why we need European action on rare disease!Why we need European action on rare disease!May 2021Read More
Community Advisory Boards – Early SuccessesCommunity Advisory Boards – Early SuccessesJanuary 2021Read More
How has COVID-19 impacted people with rare diseases?How has COVID-19 impacted people with rare diseases?October 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 industryJanuary 2023Read More
A EURORDIS report from the High-level Ministerial Conference on Rare DiseasesA EURORDIS report from the High-level Ministerial Conference on Rare DiseasesMarch 2022Read More
Recommendations from the Rare 2030 foresight studyRecommendations from the Rare 2030 foresight studyFebruary 2021Read More
ECRD 2020 Executive SummaryECRD 2020 Executive SummaryNovember 2020Read More

Position Papers

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EFPIA-EURORDIS Joint Statement on Patient Access to Medicines for Rare DiseasesEFPIA-EURORDIS Joint Statement on Patient Access to Medicines for Rare DiseasesJune 2022Read More
EU Fund on Rare Disease Reflection Paper EURORDIS EU Fund on Rare Disease Reflection Paper EURORDIS February 2021Read More
Key principles for newborn screeningKey principles for newborn screeningJanuary 2021Read More
Recommendations to achieve a mature ERN system in 2030Recommendations to achieve a mature ERN system in 2030December 2020Read More

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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35th Workshop of the EURORDIS Round Table of Companies (ERTC)35th Workshop of the EURORDIS Round Table of Companies (ERTC)January 2023Read More
34th Workshop of the EURORDIS Round Table of Companies (ERTC)34th Workshop of the EURORDIS Round Table of Companies (ERTC)August 2022Read More
ERTC Code of ConductERTC Code of ConductJuly 2022Download
33rd EURORDIS Round Table of Companies Workshop33rd EURORDIS Round Table of Companies WorkshopMay 2022Read More