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Latest Resources

TIME TO ACT – Improving Rare Disease Diagnosis and solving the unsolved Rare Disease through collaboration in EuropeTIME TO ACT – Improving Rare Disease Diagnosis and solving the unsolved Rare Disease through collaboration in EuropeMay 2023Read More
EURORDIS StatutesEURORDIS StatutesMay 2023Download
EURORDIS By-LawsEURORDIS By-LawsMay 2023Download
EURORDIS Financial Report 2022EURORDIS Financial Report 2022May 2023Read More

Annual Reports & Work Programmes

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EURORDIS Financial Report 2022EURORDIS Financial Report 2022May 2023Read More
EURORDIS Activity Report 2022 EURORDIS Activity Report 2022 May 2023Read More
EURORDIS Work Programme 2023EURORDIS Work Programme 2023May 2023Read More
EURORDIS Financial Report 2021EURORDIS Financial Report 2021May 2022Download

Scientific papers

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Patient journey experiences may contribute to improve healthcare for patients with rare endocrine diseasesPatient journey experiences may contribute to improve healthcare for patients with rare endocrine diseasesDecember 2022Read more
Rare disease education in Europe and beyond: time to actRare disease education in Europe and beyond: time to actDecember 2022Read more
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 settingNovember 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 casesSeptember 2022Read more

Factsheets and infographics

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TIME TO ACT – Improving Rare Disease Diagnosis and solving the unsolved Rare Disease through collaboration in EuropeTIME TO ACT – Improving Rare Disease Diagnosis and solving the unsolved Rare Disease through collaboration in EuropeMay 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 – 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

Other publications

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EURORDIS StatutesEURORDIS StatutesMay 2023Download
EURORDIS By-LawsEURORDIS By-LawsMay 2023Download
Code of Practice between patient organisations and the healthcare industryCode of Practice between patient organisations and the healthcare industryJanuary 2023Read More
All-ePAG meeting 2022All-ePAG meeting 2022December 2022Download

Position Papers

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Joint statement on the European Health Data Space Draft ProposalJoint statement on the European Health Data Space Draft ProposalMarch 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 RegulationNovember 2022Read More
EURORDIS’ Position on the European Health Data SpaceEURORDIS’ Position on the European Health Data SpaceOctober 2022Read More
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

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

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