Principles of Care
The Problem: A Patchwork of Care for a Complex Disease
Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare and complex neurological disorder that affects patients in Europe and across the globe. However, despite medical advancements, far too many individuals with CIDP experience long, uncertain diagnostic journeys, inconsistent treatment approaches, and fragmented care.
Access to high-quality, person-centered care varies widely, not only between countries, but often even within the same healthcare system. For many patients and their loved ones, navigating CIDP remains a complicated, confusing, and overwhelming experience, filled with delays, uncertainty, and unmet needs.
These points, along with many other barriers and challenges to care, were previously identified and highlighted.
The urgent reality is clear: while CIDP is a complex disease, the standard of care should not be.
The Promise: The Commitment to Principles of Care
The GBS|CIDP Foundation International and the European Patient Organisation for Dysimmune and Inflammatory Neuropathies (EPODIN) are proud to announce the Principles of Care (PoC) initiative, a four-year European project designed to transform the future of CIDP care.
The PoC represents a vision and a promise: to build a patient-centered, community driven framework that addresses the critical gaps in diagnosis, treatment, and long-term management. This effort is grounded in real-world evidence of community needs in Europe and aims to support meaningful improvements across different healthcare systems..
Through collaboration, advocacy, and innovation, the PoC will offer a clear pathway forward for those living with CIDP.
What Makes the Principles of Care Initiative Unique
Unlike traditional top-down models of healthcare guidance, the Principles of Care will be co-created by patients, care partners, and healthcare professionals.
At the heart of the project lies a commitment to inclusivity and lived experience. Patients and care partners will work hand-in-hand with medical experts to define what truly matters: timely diagnosis, access to appropriate treatments, shared decision-making, and whole-person care that acknowledges the emotional, physical, and social realities of living with CIDP. Furthermore, we aim to capture the unique needs and challenges of patients across Europe.
The PoC will serve not only as an advocacy tool and policy driver but also as a journey map for both patients and healthcare providers, helping to ensure a coordinated, holistic approach to inflammatory neuropathies like CIDP.
Why It Matters
The Principles of Care are about more than guidelines. They are about lives.
- For patients and care partners, the PoC offers clarity, empowerment, and reassurance, providing a roadmap for what quality care should look like at every step of their journey.
- For healthcare providers, it offers a common framework for diagnosis, treatment, and long-term management rooted in real-world patient experiences. They will be better equipped to identify care needs and improve treatment standards.
- For policymakers and health advocates, the PoC will serve as a credible, evidence-informed tool to advocate for system-wide improvements that ensure no CIDP patient is left behind regardless of where they live or receive care in Europe.
Above all, the Principles of Care will bridge gaps, build trust, and chart a course toward better outcomes and better lives for people affected by CIDP.
How the Project Will Work
The Principles of Care project will unfold over a structured four-year timeline, starting in 2025:
- Workshops and collaborative forums: Patients, advocates, healthcare professionals, and other stakeholders will come together to identify key challenges, share expertise, and build consensus.
- Evidence-based advocacy: Data and insights gathered will inform the drafting of a Principles of Care charter, to be validated through ongoing community feedback. Furthermore, the aim is to also ensure the robustness of the collected data, as it is strategically created through evidence-based decision-making.
- Training and implementation support: Once developed, the PoC will serve as a living resource – supported by educational initiatives to empower adoption by patients, clinicians, and advocacy networks.
A key part of the initiative will be the Partnership Forum: a series of structured meetings where organizational partners are invited to contribute insights in support of the project.
All strategic decisions will remain fully guided by the Steering Committee comprised equally of patient advocates and healthcare professionals, ensuring that the project’s mission – to improve patient care standards across different healthcare systems throughout the world – remains aligned with the best interests of the CIDP community.
Join Us in Building the Future of CIDP Care
The GBS|CIDP Foundation International and EPODINinvite European patients, advocates, healthcare providers, researchers, and partners to join us in our efforts to address the problem and ensure a future where every person with CIDP receives the care they deserve – timely, compassionate, and grounded in best practices – no matter where their journey begins. For more information, or if you would like to be considered for one of our upcoming patient or HCP focus groups, with regard to the Principles of Care project, go to: poc@gbs-cidp.org and poc@epodin.org
Follow our progress, stay engaged, and help shape a world where better CIDP care is not just an idea – it is a promise.
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