Webinar: Patient Partnership 2025 – The Lupus100 Project
August 2025
The Lupus100 Project, recognized as a winner of the 2025 Patient Partnership Good Practice Challenge, highlights the crucial role of patient partnership in improving communication about rare diseases such as lupus.
This multilingual, co-created patient resource was developed collaboratively by ERN ReCONNET and Lupus Europe. It transforms a national patient booklet into a Europe-wide, medically validated information tool that addresses real patient questions about lupus.
In this informative session, Eric Hachulla, Chair of the Education and Training working group and a clinician at ERN ReCONNET, Jeannette Andersen, Chair of Lupus Europe and a patient representative from ERN ReCONNET, and Zoe Karakikla-Mitsakou, General Secretary of Lupus Europe, will discuss how effective collaboration between patients and clinicians contributed to the development of this impactful project.
The discussion will explore how patient partnership enhances rare disease communication strategies, share lessons learned, and identify opportunities for future co-creation initiatives aimed at improving patient education and support.
💬 Webinar: Patient Partnership 2025 – The Lupus100 Project
➡️ Register Now!
🗓️ 18 September 2025
⏰ 18:00 – 19:00 CET