Eurordis - Rare Disease Europe

Factsheet – Patient Partnership Webinars and ERN’s on Air Podcast

Learn more about the available podcasts and webinars on Patient Partnership in the ERNs and spread the word!

Assessing Patient Partnership Implementation in the ERNs

ERNs can assess patient partnership in their Network by using these questionnaires (adapted by EURORDIS from McMaster University, Canada) and conducting a joint reflection session to create a collaboration plan.

Template Questionnaire (ePAG) – Assessing Patient Partnership Implementation in the ERNs

To collect feedback from ePAG advocates on their involvement in the ERN and their partnership with health professionals. Template is available in Word and EU survey format. It is recommended to use together with the Leadership questionnaire.

Template Questionnaire (Leardership) – Assessing Patient Partnership Implementation in the ERNs

To evaluate how patient partnership is integrated across various aspects of the ERN’s work. Template is available in Word and EU survey format. It is recommended to use together with the ePAG questionnaire.

Factsheet – Assessing Patient Partnership Implementation in ERNs

Use this factsheet to easily communicate about how ERNs can assess patient partnership in their Network by using a set of two questionnaires and conducting a joint reflection session.

Assessing Patient Partnership Implementation in the ERNs

Patient Partnership in the European Reference Networks (ERNs) can be defined as a mutual relationship between people living with a rare disease (PLWRD) and health professionals involved in an ERN where input from PLWRD routinely and formally informs the Network’s collaborative activities and decision-making[1]. To understand the impact and continuously improve Patient Partnership in each […]

Supporting the continuous development and use of a patient partnership framework in European rare disease networks (ERNs): a scoping review of frameworks in the scientific literature

Factsheet Bundle – EURORDIS tools for Patient Partnership in the ERNs

Use these factsheets to spread the voice on EURORDIS tools for Patient Partnership in the ERNs!

Patient partnership framework for Clinical Trials in the ERNs

This framework, developed under ERICA WP4, aims to provide structure for embedding patient partnership in clinical trials conducted within ERNs. The final version is yet not published, but a poster of the project is available.

Demo Webinar Patient Partnership Hub

Discover how to use this Hub: browse its content or utilise its search function to find specific information by keyword, area of work, or type of resource, with all filters fully interoperable.