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ePAG Resources
In this section, you will find a wide variety of materials: from practical guides and toolkits to webinars, posters and many readily available and adaptable resources generated with and for the ePAG community.
Latest Documents
Building Good Practices: Patient Engagement in the Reference Networks
Peer-to-peer learning is a powerful resource to drive change and showcase how patient involvement in ERNs is delivering results. Videoconferences on the “ePAG exchange of good practices” are organised by EURORDIS throughout the year. ePAG advocates present their activities to guide others through their own experiences, identifying success factors and capturing lessons learned. The presentations of these good practices and the recordings are available below.
Patient Partnership in Healthcare Webinar – Patient Journeyshis webinar is part of the Improving Patient Partnership Series, during which the recently introduced Guide to Creating a Patient Journey and accompanying templates were showcased. Patient Journeys capture the natural history of a rare condition and the needs of patients through their day-to-day experiences. Patient representatives active in the ERNs can make use of these tools to engage with their communities and identify common needs for each rare condition so that they can be used to guide the Networks’ actions to meet these needs.
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Patient Partnership in Educational Programmes: ERN NMD Rehabilitation Summer SchoolIn this webinar within the Improving Patient Partnership Series, Jean Philippe Plançon, President of European Patient Organization for Dysimmune and Inflammatory Neuropathies (EPODIN) and Chair of the ERN NMD Educational Board, talks about the success his organisation found with their patient partnership in training programme!
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Exchange of good practice webinarImproved patient-clinician shared leadership and collaboration was a cross-cutting need identified by all 24 European Reference Networks (ERNs) and European Patient Advocacy Groups (ePAGs). To address this need, EURORDIS organized and co-funded with 3 ERNs patient-clinician team building pilots. The ERNs participating in the team building pilots were ERN ReCONNET, ERN ITHACA and ERN LUNG. |
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Good practice: Patient involvement in identifying unmet needs on clinical patient guidelinesCharissa Frank, Ilaria Galetti, Ana Vieira, ePAG patient advocates ERN ReCONNET (European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases) |
Good practice: Raising awareness of ERNs at the national levelDorica Dan, ePAG patient advocate ERN-ITHACA (ERN on congenital malformations & rare intellectual disability)
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Good practice: Developing patient journeysSue Routledge, Ammi Sundqvist Andersson, ePAG patient advocates ERN-ITHACA (ERN on congenital malformations & rare intellectual disability) |
Good Practice: Rare eye disease ontology creation and editingRussell Wheeler, ePAG patient advocate ERN EYE (European Reference Network on Rare Eye Diseases) |
Good practice: Supporting the engagement in ERNs of under-represented patient communitiesLoris Brunetta, ePAG advocate, EuroBloodNet ERN (European Reference Network on Rare Hematological Diseases (RHD)
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Good practice: Patients’ Involvement in the ENDO ERN Registry project (EuRRECa)Johan de Graaf, ePAG advocate, ENDO ERN (European Reference Network on Rare Endocrine Conditions)
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Good practice: Patient Involvement in the development of Surgical Consensus Statements for Esophageal Atresia (EA) diseaseGraham Slater, Anke Widenmann-Grolig, JoAnne Fruithof, ePAG advocates, ERNICA (European Reference Network for rare inherited and congenital digestive disorders, including gastro-intestinal disorders) |
Good practice: Building a National ePAG group (ePAG Italy) in collaboration with the Italian National AllianceIsabella Brambilla, ePAG advocate, EpiCARE (European Reference Network on epilepsies) on behalf of the 45 ePAG advocates members of the ePAG Italy |
Good practice: Creation of National Networks of Centers of Expertise in The Netherlands and collaboration with the Dutch National Alliance in the Project Connect ExtendedCaroline van den Bosch, ePAG advocate, VASCERN (European Reference Network on Rare Multisystemic Vascular Diseases)
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Good practice: Developing a Patient Satisfaction QuestionnaireMarie-Claude Boiteux, ePAG advocate, ERN Skin (European Reference Network on skin disorders) Jessie Dubief, EURORDIS |
Peer-learning pills: Development of patient reported outcome measures (PROMs)Daniel Lewi, ePAG advocate in MetabERN (European Reference Network on hereditary metabolic disorders) |
Good Practice: Patient-clinician feedback sessionAngela Leburgue, ePAG advocate, Rare Hepatological diseases Claudia Sproedt, ePAG advocate, European Rare Kidney Diseases |
Patient Engagement in Clinical Practice Guideline DevelopmentGareth Davies, ePAG advocate in ERN CRANIO |
Good Practice: Designing SurveysJessie Dubief, Rare Barometer Research Executive Ilaria Galetti and Silvia Aguilera, ePAG advocates at ReCONNET Diana Marinello, project manager at ReCONNET |
AMEQUIS ePAG Webinar |
Good Practice: VASCERN Flowchart |