Announcing the Winners (February 2025)
We are excited to announce the winners of the 2025 Patient Partnership Challenge, recognising outstanding examples of collaboration between patient representative and healthcare professionals within European Reference Networks (ERNs). This initiative has spotlighted innovative practices that enhance patient engagement and foster valuable partnerships between patients and healthcare professionals across the Networks, improving healthcare for people living with a rare or complex condition.
After the evaluation by our Selection Committee, which included 2 ERN patient representatives, 2 ERN project managers, a researcher and one EURORDIS staff, we are proud to recognise the following winning practices:
- ERN Lung: The Undiagnosed Patients Working Group
Submitted by Lisa Rist, ERN Lung Project Manager, Focus on Undiagnosed Patients Work Package
The UnDiagnosed Patients Working Group (WG) operates within ERN LUNG. In this WG, clinicians collaborate with patient representatives to develop a standard operating procedure in form of a pathway for the referral of undiagnosed patients with respiratory symptoms to ERN-LUNG (European level of finding a diagnosis).
- ENDO ERN: European Medicine Shortages – How Can We Avoid a Disaster for Patients with Rare Conditions?
Submitted by Johan De Graaf, Patient Representative, Co-Chair to ENDO ERN ePAG
This patient-led initiative aims to provide some light by mapping inequities in endocrine drug provision across Europe. The project consists of understanding endocrine medicine shortages by collecting data through a set of three surveys.
- ERN ReCONNECT: The Lupus100 Project
Submitted by Jeanette Andersen, Patient Representative, Co-ePAG Lead, and Steering Committee Member in ERN ReCONNECT
The Lupus100 project is a multilingual, patient-centered initiative aimed at providing accurate, medically validated information about lupus. Inspired by the French book “Lupus in 100 Questions,” the project updated and internationalised the content, ensuring relevance to a European audience and presenting the most common questions patients have about lupus in lay language.
These three exemplary practices will be showcased in our Patient Partnership Webinar Series 2025 or podcast series, where each winning practice will have the opportunity to present their work to a wider audience. Additionally, they will receive professional support to create high-quality printable materials that will help share their work and inspire others in the field.
We thank all participants for their contributions and look forward to learning from these inspiring examples in our upcoming webinars!
About the Patient Partnership Good Practice Challenge
The 2025 Patient Partnership Good Practice Challenge showcased outstanding collaborations between patient representatives and healthcare professionals within European Reference Networks (ERNs). The initiative aimed to inspire peer learning and improve healthcare outcomes by highlighting innovative practices that enhance patient engagement.
Submissions were invited from across the ERNs, focusing on effective patient-clinician collaboration or innovative approaches to patient partnership. A Selection Committee evaluated the entries against the Criteria for Patient Partnership Good Practices in the ERNs from the Patient Partnership Framework for the ERNs. They selected three to feature in the 2025 Patient Partnership Webinar Series and receive professional support to create high-quality materials to share their work more widely.
The deadline for submissions was 15 December 2024. We thank all participants for their inspiring contributions and encourage continued excellence in patient partnership within the ERNs.