Patient Information

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Patient Engagement Resource Center

Published by EATRIS

Patient EngagementPatient InformationResearch and Drug Development

The Patient Engagement Resource center is an easy to navigate platform to help researchers get started with patient engagement in research. This toolbox provides helpful resources to help researchers understand the basics of patient engagement, and guide them through the different phases of patient engagement, from planning to conducting and evaluating.

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Short guide on patient partnerships in rare disease research projects

Published by EJPRD

Patient EngagementPatient InformationResearch and Drug Development

This guide has been developed with the help of a working group comprising of patient representatives and research funders. Its main goal is to encourage fruitful, sustainable and enduring partnerships between scientists and patient organisa tions, co-leading the way for systematic patient-centered research. It also aims to foster a partnership culture and contribute to an improved understanding of the added value of patient engagement and involvement in basic, pre-clinical, translational and social research for the Rare Disease Community in Europe and beyond.

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New-born screening programs

Published by IRDiRC

Genetic ConditionNewborn Sreening ProgrammePatient InformationRare DiseaseResearch and Drug Development

The purpose of NBS is to detect potentially fatal or disabling conditions in newborns as early as possible and possibly before onset of symptoms. Such detection allows the early treatment which may significantly modify the natural history of the disease and potentially prevent developmental delays, physical disabilities and eventually death.

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Initiatives for undiagnosed diseases

Published by IRDiRC

Genetic ConditionGenotype and Phenotype MatchmakingPatient InformationResearch and Drug DevelopmentUndiagnosed Disease Programme

The purposes of Undiagnosed Diseases Programs (UDPs) are to provide patients with an unknown genetic condition a diagnosis and to find the correlation between genotype and phenotype; to share globally the information to facilitate the diagnosis through a matchmaking for finding possible second cases

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European Patients’ Academy (EUPATI) toolbox

Published by IRDiRC

EUPATIOrphan DrugPatient InformationPatient TrainingResearch and Drug DevelopmentToolboxToolkit for Patient

The EUPATI Academy is the only in-depth training program for patient experts so far in EU that lasts 14months.
It includes an on online training program supported with two weeks of F2F training. The Academy is still operated by EPF, providing high quality training in drug development to patient from EMEA.

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EURORDIS’ Community Advisory Boards

Published by IRDiRC

Community Advisory BoardEurordisMedical ResearchOrphan Drug DevelopmentPatient AdvocatePatient InformationPatient OrganisationRare DiseaseResearch and Drug Development

Patient Community Advisory Boards are groups established and operated by patient advocates. They facilitate discussions in a safe harbour setting and under strict rules, an MOU and CA on the latest developments and challenges related to medical research and procedures in a disease area with the company or body conducting the research. The CAB can cover from preclinical to post marketing topics. The CAB depending on the areas of discussion can invite scientific expert to serve as advisors.

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