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Factsheets and infographics

Experiences of people living with a rare disease with healthcare: a scoping review for the H-CARE projectExperiences of people living with a rare disease with healthcare: a scoping review for the H-CARE projectJanuary 2025Read More
Integrated care for rare diseases: Bridging the gap to improve the lives of 30 million people in EuropeIntegrated care for rare diseases: Bridging the gap to improve the lives of 30 million people in EuropeAugust 2024Read More
Guide to developing a Patient JourneyGuide to developing a Patient JourneyMarch 2024Read More
Patient Partnership Framework for ERNsPatient Partnership Framework for ERNsNovember 2023Read More
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
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
Setting Standards of Care Quality!Setting Standards of Care Quality!January 2021Read More
Improve our experience of health care!Improve our experience of health care!January 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
Share and protect our health data!Share and protect our health data!January 2020Read More
European Patient Advocacy Groups (ePAGs)European Patient Advocacy Groups (ePAGs)July 2019Read More
Work-life balance Directive fact sheetWork-life balance Directive fact sheetJanuary 2019Read More
An insight into the participation of rare disease patients in researchAn insight into the participation of rare disease patients in researchNovember 2018Read 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 – InfographicJune 2017Read More
Resource Centres for Rare DiseasesResource Centres for Rare DiseasesMay 2013Read More
Adapted Housing Services for Rare DiseasesAdapted Housing Services for Rare DiseasesMay 2013Read More
Centres of ExpertiseCentres of ExpertiseDecember 2012Read More
National help lines for rare diseasesNational help lines for rare diseasesDecember 2012Read More
European Reference Networks of Centres of ExpertiseEuropean Reference Networks of Centres of ExpertiseDecember 2012Read More
Rare Disease Patient RegistriesRare Disease Patient RegistriesFebruary 2011Read More
OrphanetOrphanetNovember 2010Read More
Therapeutic Recreation Programmes for Rare DiseasesTherapeutic Recreation Programmes for Rare DiseasesNovember 2010Read More
Rare disease patient groups in the European UnionRare disease patient groups in the European UnionJune 2010Read More
Respite Care Services for Rare DiseasesRespite Care Services for Rare DiseasesJune 2010Read More