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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 Conductjuillet 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 – Romaniajuillet 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 – Moldovajuin 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 2019juin 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 Successesjanvier 2021Read More
How has COVID-19 impacted people with rare diseases?How has COVID-19 impacted people with rare diseases?octobre 2020Read More
Solve-RD infographic on the patient journey to diagnosisSolve-RD infographic on the patient journey to diagnosisjuillet 2020Read More

Other publications

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Recommendations from the Rare 2030 foresight studyRecommendations from the Rare 2030 foresight studyfévrier 2021Read More
ECRD 2020 Executive SummaryECRD 2020 Executive Summarynovembre 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 Cancersjuin 2020Read More
EURORDIS LeafletEURORDIS Leafletnovembre 2019Read More

Position Papers

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EU Fund on Rare Disease Reflection Paper EURORDIS EU Fund on Rare Disease Reflection Paper EURORDIS février 2021Read More
Key principles for newborn screeningKey principles for newborn screeningjanvier 2021Read More
Recommendations to achieve a mature ERN system in 2030Recommendations to achieve a mature ERN system in 2030décembre 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 contributionmars 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 Lifetime Achievement Award 2021 – Milan Macek

Living with a rare disease

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#Resolution4Rare : campagne mondiale pour une première Résolution de l’ONU sur les personnes atteintes de maladie raremai 2021Visit story
Carpe diem : l’histoire de Noémie, qui vit avec une sclérose latérale amyotrophique (SLA)juin 2019Visit story
Carpe diem : l’histoire de Noémie, qui vit avec une sclérose latérale amyotrophique (SLA)juin 2019Visit story
L’histoire de Steven : ou comment vivre avec une adrénoleucodystrophiejanvier 2019Visit story

EURORDIS Round Table of Companies (ERTC)

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ERTC Code of ConductERTC Code of Conductjuillet 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 Workshopoctobre 2021Read More
31st EURORDIS Round Table of Companies Workshop31st EURORDIS Round Table of Companies Workshopmars 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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