Principles of Care for CIDP Workshops 2025: Summary and Next Steps
To learn more about the Foundation’s ongoing Principles of Care (PoC) initiative, please click here.
In October and November 2025, the Principles of Care (PoC) for CIDP project brought together patient advocates and healthcare professionals from across Europe through two in-person workshops designed to strengthen the evidence base for improving CIDP care. This international initiative by GBS|CIDP Foundation International and the European Patient Organisation for Dysimmune and Inflammatory Neuropathies (EPODIN), supported by Patvocates, is developing a patient-centered framework to help improve care standards, support advocacy, and inform health policy discussions.
The first workshop took place in October 2025 in Berlin and convened 16 patient advocates and one care partner from 14 European countries, including Belgium, Croatia, France, Germany, Hungary, Ireland, Italy, Lithuania, the Netherlands, Poland, Serbia, Spain, Sweden, and the United Kingdom. Participants shared lived experience, identified barriers, and helped define what needs to change across diagnosis, treatment, and ongoing care.
The second workshop was held in November 2025 in Barcelona and gathered 16 healthcare professionals from 10 European countries, including Denmark, Germany, Greece, Italy, Ireland, the Netherlands, Poland, Serbia, Spain, and the United Kingdom. Participants included neurologists, nurses, psychologists, physiotherapists, social workers, and researchers, who worked together to examine challenges and potential solutions from both clinical and health system perspectives.
Participation across both workshops was strong and provides a solid foundation for the next phase of work, including follow-up interviews and synthesis across community experience and clinical practice. GBS|CIDP Foundation International would like to thank all participants and collaborators for their time, expertise, and commitment to improving CIDP care.
We gratefully acknowledge the support of our sponsors: argenx, Grifols, Johnson & Johnson, Sanofi, and Takeda. Building on the workshops, the project will now move into the next steps, including a post-Partnership Forum meeting with sponsors, continued collaboration, follow-up individual interviews, a third workshop bringing patient advocates and healthcare professionals together, and further development of the Principles of Care for CIDP into a manuscript.
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