Eurordis - Rare Disease Europe

Exchange of good practice webinar

Improved 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.

• • Fact sheet
  • Presentation

Good practice: Patient involvement in identifying unmet needs on clinical patient guidelines

Charissa Frank, Ilaria Galetti, Ana Vieira, ePAG patient advocates ERN ReCONNET (European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases)

• • Fact sheet
  • Presentation

Good practice: Raising awareness of ERNs at the national level

Dorica Dan, ePAG patient advocate ERN-ITHACA (ERN on congenital malformations & rare intellectual disability)

• Fact sheet
• Presentation

Good practice: Developing patient journeys

Sue Routledge, Ammi Sundqvist Andersson, ePAG patient advocates ERN-ITHACA (ERN on congenital malformations & rare intellectual disability)

• Fact sheet
• Presentation

Good Practice: Rare eye disease ontology creation and editing

Russell Wheeler, ePAG patient advocate ERN EYE (European Reference Network on Rare Eye Diseases)

• Fact sheet

Good practice: Supporting the engagement in ERNs of under-represented patient communities

Loris Brunetta, ePAG advocate, EuroBloodNet ERN (European Reference Network on Rare Hematological Diseases (RHD)

• Fact sheet

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)

• Fact sheet

Good practice: Patient Involvement in the development of Surgical Consensus Statements for Esophageal Atresia (EA) disease

Graham Slater, Anke Widenmann-Grolig, JoAnne Fruithof, ePAG advocates, ERNICA (European Reference Network for rare inherited and congenital digestive disorders, including gastro-intestinal disorders)

• Fact sheet
• Presentation

Good practice: Building a National ePAG group (ePAG Italy) in collaboration with the Italian National Alliance

Isabella Brambilla, ePAG advocate, EpiCARE (European Reference Network on epilepsies) on behalf of the 45 ePAG advocates members of the ePAG Italy

• Fact sheet
• Presentation

Good practice: Creation of National Networks of Centers of Expertise in The Netherlands and collaboration with the Dutch National Alliance in the Project Connect Extended

Caroline van den Bosch, ePAG advocate, VASCERN (European Reference Network on Rare Multisystemic Vascular Diseases)

• Fact sheet
• Presentation

Good practice: Developing a Patient Satisfaction Questionnaire

Marie-Claude Boiteux, ePAG advocate, ERN Skin (European Reference Network on skin disorders)

Jessie Dubief, EURORDIS

• Fact sheet
• Presentation
• Presentation

Peer-learning pills: Development of patient reported outcome measures (PROMs)

Daniel Lewi, ePAG advocate in MetabERN (European Reference Network on hereditary metabolic disorders)

• Presentation

Good Practice: Patient-clinician feedback session

Angela Leburgue, ePAG advocate, Rare Hepatological diseases

Claudia Sproedt, ePAG advocate, European Rare Kidney Diseases

• Fact sheet
• Presentation – Angela Leburgue
• Presentation – Claudia Sproedt

Patient Engagement in Clinical Practice Guideline Development

Gareth Davies, ePAG advocate in ERN CRANIO
Claas Roehl, ePAG advocates in GENTURIS

• Factsheet
• Presentation

Good Practice: Designing Surveys

Jessie Dubief, Rare Barometer Research Executive

Ilaria Galetti and Silvia Aguilera, ePAG advocates at ReCONNET

Diana Marinello, project manager at ReCONNET

•  Factsheet
•  Presentation – Jessie Dubief
•  Presentation – Ilaria Galetti, Silvia Aguilera and Diana Marinello

AMEQUIS ePAG Webinar

• Presentation

Good Practice: VASCERN Flowchart

• Factsheet
• Presentation