Going into the GBS|CIDP Foundation International’s 2025 Symposium in Denver, I was prepared for a lot. Fellow staff members and patients told me about how inspiring it was, and how much fun I would have interacting with our community in person. Coming back, I can happily say that all of this came true and more. My first Symposium was filled with excitement, inspiration, and joy beyond even what I had expected. I enjoyed sharing experiences about our advocacy work to patients, discussing experiences, and most of all, listening to others. But what I had not expected was how the Symposium provided an connection that was so deeply needed for patients not just with GBS, CIDP, and MMN, but for those across the world who have been diagnosed with a rare disease.
During my time at the Foundation, one of the first things that became immediately clear to me was how critical it is for patients to have meaningful relationships with those who can understand and appreciate what they’re going through. Time and again in my advocacy work I would inevitably speak with patients about how they were diagnosed and the struggles they experienced both before and after. For patients with CIDP and MMN, where a typical diagnosis occurs within months or years, this process is often emotionally and psychologically challenging. Many patients go through periods of poor communication, not being listened to by their doctors, and engaging with professionals who often have never met a patient with their condition.
Even after being diagnosed, patients can still struggle with the isolation of living with a condition—or the aftermath of one—that has complicated physical symptoms. Patients can struggle to express the daily changes they may go through as their symptoms wax and wane and worry about whether their symptoms may worsen over time.
Recently, a growing conversation has developed in medical fields over the need to build trust between patients and the medical community through greater patient-centered care. In some cases, greater attention is now being paid to issues of chronic illnesses, and those suffering from “invisible illnesses”— illnesses that people live with that may not be obvious to others. Additionally, greater attention has also been placed on the ability of medical practitioners to listen to their patient experiences and address historical failings to provide adequate care to certain communities. For example, regarding issues such as pain or discomfort, many studies have shown that women may have a more difficult time explaining their symptoms to their doctors. At the Symposium an entire day was focused on this very issue, as patients and medical professionals attended sessions on the mental and emotional wellbeing of patients living with chronic illnesses.
At a time when people are increasingly relying on Google and AI to gather information on their conditions, greater patient care is more important than ever. While patients are now able to connect and share their experiences across platforms, these developments can come at the cost of greater access to misinformation which those who have had negative experiences with the healthcare system may be more susceptible to.
Developments in greater patient centered care can help to slow the flow of misinformation, rebuild trust in sound medical practices and help advance the awareness of research-based treatment protocols.
In this sense, the Symposium was a breath of fresh air and presented an opportunity for patients with GBS, CIDP, and MMN to connect and share experiences alongside medical professionals to strengthen the ability of practitioners and patients to understand the scope of these conditions and how best to live with them. Here, patients, many of whom had yet to meet another person outside of their family and friends who even knew what their conditions were, encountered hundreds of others who had gone through the same thing they did and had come out the other end stronger. Here, they could connect, share experiences, and take advice from experts in their field who were interested and willing to listen to their experiences.
At the Symposium, I saw that the Foundation’s core pillars: Support, Education, Research, and Advocacy were not just separate values, but a part of a coordinated vision for a world in which patients would not need to live in isolation and concern—a world was on fully display in Denver. As the Foundation and the Symposium grows, I look forward to seeing the future of how they will continue to lead in promoting greater patient centered care and brighter future for patients with rare diseases.
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