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Eurordis - Rare Disease Europe

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Latest Resources

Q&A Factsheet: 5-Year Evaluation of the European Reference NetworksQ&A Factsheet: 5-Year Evaluation of the European Reference NetworksSeptember 2022Read More
Patient Guide to the 5-Year Evaluation of the European Reference NetworksPatient Guide to the 5-Year Evaluation of the European Reference NetworksSeptember 2022Read More
Guide for Patient involvement in the development of clinical practice guidelines & clinical decision support toolsGuide for Patient involvement in the development of clinical practice guidelines & clinical decision support toolsSeptember 2022Read More
Helping Ukraine to Build Back Better for Rare DiseasesHelping Ukraine to Build Back Better for Rare DiseasesSeptember 2022Read More

Annual Report

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EURORDIS Financial Report 2021EURORDIS Financial Report 2021May 2022Download
EURORDIS Activity report 2021EURORDIS Activity report 2021May 2022Download
EURORDIS Activity report 2020EURORDIS Activity report 2020May 2021Download
EURORDIS Activity report 2019EURORDIS Activity report 2019June 2020Download

Factsheets and infographics

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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
Solve-RD infographic on the patient journey to diagnosisSolve-RD infographic on the patient journey to diagnosisJuly 2020Read More

Other publications

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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
RARE CANCER AGENDA 2030 – Ten Recommendations from the EU Joint Action on Rare CancersRARE CANCER AGENDA 2030 – Ten Recommendations from the EU Joint Action on Rare CancersJune 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

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
EURORDIS Written Media Award 2021 – Ana Ilić

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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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
32nd EURORDIS Round Table of Companies Workshop32nd EURORDIS Round Table of Companies WorkshopOctober 2021Read More

Webinars

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