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Eurordis - Rare Disease Europe

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Resources

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Latest Resources

ERTC Code of ConductERTC Code of ConductJuli 2022Download
A EURORDIS report on the challenges faced by displaced Ukrainians affected by a rare disease – RomaniaA EURORDIS report on the challenges faced by displaced Ukrainians affected by a rare disease – RomaniaJuli 2022Read More
A EURORDIS report on the challenges faced by displaced Ukrainians affected by a rare disease – MoldovaA EURORDIS report on the challenges faced by displaced Ukrainians affected by a rare disease – MoldovaJuni 2022Read More
33rd EURORDIS Round Table of Companies Workshop33rd EURORDIS Round Table of Companies WorkshopMai 2022Read More

Annual Report

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EURORDIS Financial Report 2021EURORDIS Financial Report 2021Mai 2022Download
EURORDIS Activity report 2021EURORDIS Activity report 2021Mai 2022Download
EURORDIS Activity report 2020EURORDIS Activity report 2020Mai 2021Download
EURORDIS Activity report 2019EURORDIS Activity report 2019Juni 2020Download

Factsheets and infographics

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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 SuccessesJanuar 2021Read More
How has COVID-19 impacted people with rare diseases?How has COVID-19 impacted people with rare diseases?Oktober 2020Read More
Solve-RD infographic on the patient journey to diagnosisSolve-RD infographic on the patient journey to diagnosisJuli 2020Read More

Other publications

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Recommendations from the Rare 2030 foresight studyRecommendations from the Rare 2030 foresight studyFebruar 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 CancersJuni 2020Read More
EURORDIS LeafletEURORDIS LeafletNovember 2019Read More

Position Papers

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EU Fund on Rare Disease Reflection Paper EURORDIS EU Fund on Rare Disease Reflection Paper EURORDIS Februar 2021Read More
Key principles for newborn screeningKey principles for newborn screeningJanuar 2021Read More
Recommendations to achieve a mature ERN system in 2030Recommendations to achieve a mature ERN system in 2030Dezember 2020Read More
No time to lose: Building a data strategy for the European Reference Networks – A EURORDIS contributionNo time to lose: Building a data strategy for the European Reference Networks – A EURORDIS contributionMärz 2020Read More

EURORDIS Events

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Rare 2030 recommendations in focus
Andrzej Ryś, European Commission, on the Rare 2030 Recommendations
Frédérique Ries, MEP, on the Rare 2030 recommendations
EURORDIS Company Award for Innovation 2021 – Orchard Therapeutics

Living with a rare disease

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Carpe diem – Noémies Geschichte über ihr Leben mit amyotrophener LateralskleroseJuni 2019Visit story
Carpe diem – Noémies Geschichte über ihr Leben mit amyotrophener LateralskleroseJuni 2019Visit story
Stevens Geschichte: Leben mit AdrenoleukodystrophieJanuar 2019Visit story
Borys Geschichte: Leben mit metachromatischer LeukodystrophieOktober 2018Visit story

EURORDIS Round Table of Companies (ERTC)

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ERTC Code of ConductERTC Code of ConductJuli 2022Download
33rd EURORDIS Round Table of Companies Workshop33rd EURORDIS Round Table of Companies WorkshopMai 2022Read More
32nd EURORDIS Round Table of Companies Workshop32nd EURORDIS Round Table of Companies WorkshopOktober 2021Read More
31st EURORDIS Round Table of Companies Workshop31st EURORDIS Round Table of Companies WorkshopMärz 2021Read More

Webinars

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EURORDIS webinar on the Rare2030 survey findings
FROM POSSIBLE TO ACCESSIBLE? Launch event of RARE IMPACT report
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