Skip to content
  • Multimedia
  • Membri
  • Risorse
  • Contattaci
  • Generic selectors
    Exact matches only
    Search in title
    Search in content
    Post Type Selectors

Eurordis - Rare Disease Europe

Su di noi

Come operiamo

La nostra rete

Aree prioritarie

Ottenere informazioni

Trova supporto

Con EURORDIS

Con i nostri programmi e iniziative

Generic selectors
Exact matches only
Search in title
Search in content
Post Type Selectors
Notizie
Eventi
Membri
Risorse
Contattaci
Opzioni di accessibilità
Language
Donate

Resources

Filter Resources

Use controls below to filter your results.

Latest Resources

Joint statement on the European Health Data Space Draft ProposalJoint statement on the European Health Data Space Draft ProposalMarzo 2023Read More
Become a Parliamentary Advocate for Rare DiseasesBecome a Parliamentary Advocate for Rare DiseasesMarzo 2023Read More
Patient-clinician reflection sessionsPatient-clinician reflection sessionsFebbraio 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 – InfographicFebbraio 2023Read More

Annual Reports

See all
All-ePAG meeting 2022All-ePAG meeting 2022Dicembre 2022Download
EURORDIS Financial Report 2021EURORDIS Financial Report 2021Maggio 2022Download
EURORDIS Activity report 2021EURORDIS Activity report 2021Maggio 2022Download
EURORDIS Financial Report 2020EURORDIS Financial Report 2020Giugno 2021Download

Scientific papers

See all
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 settingNovembre 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 casesSettembre 2022Read more
Paediatric Inflammatory Bowel Disease: A Multi-Stakeholder Perspective to Improve Development of Drugs for Children and AdolescentsPaediatric Inflammatory Bowel Disease: A Multi-Stakeholder Perspective to Improve Development of Drugs for Children and AdolescentsSettembre 2022Read more
Contribution of patient registries to regulatory decision making on rare diseases medicinal products in EuropeContribution of patient registries to regulatory decision making on rare diseases medicinal products in EuropeAgosto 2022Read more

Factsheets and infographics

See all
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 – InfographicFebbraio 2023Read More
Why we need European action on rare disease!Why we need European action on rare disease!Maggio 2021Read More
Community Advisory Boards – Early SuccessesCommunity Advisory Boards – Early SuccessesGennaio 2021Read More
How has COVID-19 impacted people with rare diseases?How has COVID-19 impacted people with rare diseases?Ottobre 2020Read More

Other publications

See all
Code of Practice between patient organisations and the healthcare industryCode of Practice between patient organisations and the healthcare industryGennaio 2023Read More
A EURORDIS report from the High-level Ministerial Conference on Rare DiseasesA EURORDIS report from the High-level Ministerial Conference on Rare DiseasesMarzo 2022Read More
Recommendations from the Rare 2030 foresight studyRecommendations from the Rare 2030 foresight studyFebbraio 2021Read More
ECRD 2020 Executive SummaryECRD 2020 Executive SummaryNovembre 2020Read More

Position Papers

See all
Joint statement on the European Health Data Space Draft ProposalJoint statement on the European Health Data Space Draft ProposalMarzo 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 RegulationNovembre 2022Read More
EURORDIS’ Position on the European Health Data SpaceEURORDIS’ Position on the European Health Data SpaceOttobre 2022Read More
EFPIA-EURORDIS Joint Statement on Patient Access to Medicines for Rare DiseasesEFPIA-EURORDIS Joint Statement on Patient Access to Medicines for Rare DiseasesGiugno 2022Read More

EURORDIS Round Table of Companies (ERTC)

See all
35th Workshop of the EURORDIS Round Table of Companies (ERTC)35th Workshop of the EURORDIS Round Table of Companies (ERTC)Gennaio 2023Read More
34th Workshop of the EURORDIS Round Table of Companies (ERTC)34th Workshop of the EURORDIS Round Table of Companies (ERTC)Agosto 2022Read More
ERTC Code of ConductERTC Code of ConductLuglio 2022Download
33rd EURORDIS Round Table of Companies Workshop33rd EURORDIS Round Table of Companies WorkshopMaggio 2022Read More

Living with a rare disease

See all
Carpe diem: la storia di Noémie affetta da sclerosi laterale amiotroficaGiugno 2019Visit story
Carpe diem: la storia di Noémie affetta da sclerosi laterale amiotroficaGiugno 2019Visit story
La vita di Steven con l’adrenoleucodistrofiaGennaio 2019Visit story
Leggi la storia di Borys affetto da leucodistrofia metacromaticaOttobre 2018Visit story