Hello, how are you? My name is Alejandra González Duarte, and I am delighted to talk to you about how we established a multidisciplinary amyloidosis center in Mexico City. As you can see on this slide, we are a small group coordinating patient care, though we obviously work hand-in-hand with many other specialists who have supported us in creating this center. You are well aware that Mexico is a vast country—and Mexico City, in particular, has an immense population—so a single amyloidosis center can be quite inefficient for such a large number of people. However, by effectively communicating with colleagues both within our institution and at others, we have forged connections that greatly expand the range of possibilities and care options for patients. For instance, in a city where treatment standards vary across hospitals, having a dedicated group that can provide care, offer guidance, or help other institutions manage patients comprehensively has allowed us to achieve far more than we could have by simply treating the patients who happened to come to our hospital with this disease. The story of how we began is quite interesting; the hospital where I work is deeply involved in research. My initial idea was to launch a small study on a disease that, at the time, was extremely rare. When we identified a larger group of patients with the condition and realized they were scattered across various departments—some seen by cardiology, many by hematology, and others by neurology—we had to figure out how to bring all these specialties together to form a single team capable of providing comprehensive patient care. As is likely the case in your own hospitals, there is a vast cardiology department dedicated to numerous subspecialties. Within that department, we had to identify individuals who were interested in the condition and had clinical exposure to it. We weren’t looking for specialists who perform angioplasties; instead, we sought out professionals—such as those performing echocardiograms—who could detect amyloidosis at an early stage. That is how we built the group—person by person—that currently works at the Institute of Nutrition. To outline the sequence of events: we established an institutional cohort starting with just a few patients with amyloidosis. This group grew over time, largely because the condition is hereditary; family members from more remote regions would seek consultations at our hospital to determine if they also had the disease. From there, we began building a registry in collaboration with colleagues from other countries—a registry known as THAOS. This expanded our reach, making us known not only within our own country but also in neighboring nations like Colombia, Ecuador, and Venezuela, where people became aware that a group of specialists in Mexico was dedicated to treating these patients. As we gained international recognition as a key group in the field, pharmaceutical companies began approaching us to conduct clinical trials—a development of particular importance for Mexico, given the still-limited access to treatments. Having the opportunity to conduct clinical trials with highly advanced medications has obviously strengthened the group, while also giving patients greater access to these treatments. As you know, establishing a specialized clinic within large institutions is always challenging. However, given our significant growth—and the fact that we expanded beyond hereditary amyloidosis to address other types involving neuropathy, cardiomyopathy, or other complications—we established a dedicated amyloidosis clinic. The three or four physicians shown on the first slide manage these patients, directing them to the appropriate specialists based on their specific needs. Not every patient requires a hematology consultation; only some do. Having this specialized clinic allows for faster referrals and ensures patients are referred precisely to the right specialist. Consequently, the amyloidosis clinic holds joint sessions with various departments tailored to the individual patient’s requirements. This multidisciplinary approach—and, above all, the direct contact with physicians—ensures that patients receive targeted care without unnecessary delays. We had plenty of time to see many other patients. And as I was saying, this has also enabled us to conduct our own studies and keep our own records, allowing us to build our own experience rather than relying solely on what we read. What is the patient population we see, and what is the scope? As I mentioned, it is crucial to recognize that we serve a very diverse population; the demographic near the U.S. border differs significantly from that in Chiapas or Central America, though fortunately, Mexico City is centrally located. However, the institution where I work receives referrals from across the country—and often from abroad—because our inclusion criteria require patients to have a highly specific condition necessitating a multidisciplinary specialist approach. In other words, we see highly complex cases or patients with multiple issues requiring a collaborative solution; we may then refer them back while continuing periodic follow-ups or consulting with their primary treating physicians elsewhere. Regarding our approach, the very first thing we prioritized was cardiovascular imaging—even before the clinical consultation itself—because we knew that technicians (not just physicians) would be the first to see patients who hadn’t yet entered our clinical pathway. We also engaged radiologists specializing in MRI to provide training and education on what we look for, asking them to refer patients to us whenever they observed specific characteristics in their scans. Later on, we were able to upgrade our nuclear medicine service—which previously lacked this capability—to include PET scanning, allowing us to not only diagnose but also stage patients using the best available tools.

Regarding neurological evaluation, we didn’t just rely on the neurophysiology department; as part of the amyloidosis clinic, we also established a specialized laboratory for small-fiber neuropathy and autonomic dysfunction. We did this because we know these two manifestations appear very early in the disease and can also provide prognostic information throughout its course. We also sought out—as I mentioned—physicians specializing in other organ systems who had an interest in amyloidosis. For instance, regarding gastroenterology, we didn’t look for specialists focused on pancreatitis or reflux; instead, we sought those dealing with issues like intestinal transit, dysmotility, or chronic diarrhea. We specifically looked for endoscopists capable of performing biopsies and—when amyloidosis was suspected—submitting samples with a specific request for Congo Red staining. We engaged genetic consultants to assist with genetic testing and counseling, and we worked with internal medicine physicians—specifically those in primary care who are the first to encounter these patients. We held numerous educational sessions with them, instructing them that if they observed these specific characteristics, they should refer the patient directly to the amyloidosis clinic. We explained that we would handle the subsequent follow-up, urging them not to send patients through a long chain of other specialists, which would lead to disorganization and wasted time. What strategies did we implement? As I mentioned, once we had gradually established the clinic and built relationships with physicians within our own institution, we turned our attention to educating other health centers that might encounter patients with these characteristics.

In our specific case, the process was straightforward because the patients came from very specific communities—regions where this type of mutation was endemic. We worked closely with them, asking them to put us in touch with their treating physicians elsewhere so we could organize joint sessions—or at least discuss the case directly—and explain why our follow-up was important and what our specific approach entailed. We relied on research protocols that prioritized identifying our specific needs; we focused not just on the general landscape of amyloidosis, but specifically on the barriers to diagnosis and treatment within our own population. As I mentioned, we coordinated specialized consultations to address each patient’s needs directly; from there, the specialists we engaged would consult with other experts as needed. For instance, we coordinated with the gastroenterologist, who would then consult the transplant specialist regarding patients requiring liver transplants—determining the criteria for evaluating transplant candidacy when that option was applicable. These connections and timely referrals often happened on a personal level rather than through standard referral forms; because we had direct contact with the doctors, we would ask, “What code should I put on the referral form so you know the patient is coming from us—specifically for the protocol we designed and you’re implementing?” They might say, “Just use code 24-14,” and that way, they knew immediately it was an amyloidosis case. This saved the consulting physician from having to read the entire medical record just to understand why the patient was there. Ultimately, this approach directly improved patient care and communication, ensuring no time was wasted. This process was neither free nor quick; we had to conduct numerous continuing medical education courses. Initially, the focus was solely on basic education regarding what amyloidosis actually is, because a major barrier we faced was the common misconception that it was a single disease—I am talking about quite some time ago. We began by explaining that amyloidosis is a group of diseases, each requiring specific types of care. As the disease became better known—and as we ourselves gained expertise—we started inviting participants who already possessed a broader knowledge base and wanted to delve into the specifics of managing and treating certain types of amyloidosis, rather than just focusing on general diagnosis. This culminated in a fourth course—the most recent one, held in March of this year—where the response was truly incredible: we didn’t even have to issue invitations; people actively sought us out and signed up directly as part of their continuing education. It wasn’t just about these major, often complex courses; we also maintained constant contact by leveraging social media opportunities—such as podcasts and update series—so that people wouldn’t have to wait a whole year for a single, information-packed course covering a multitude of topics. Instead, we could address specific subjects quickly—focusing on particular topics of interest to certain groups. For example, we might cover how we manage our patients, or how to handle orthostatic hypotension in patients who also require diuretics for cardiomyopathy. We have been developing these resources for professionals who want to stay up-to-date, have questions about a specific topic, or need quick access to information on treatments and the experience we have gained at our center. As for challenges—well, every center faces them. For us, the main obstacle is obviously access to treatments. That is why having an amyloidosis center has been so important and enriching; it has opened doors to treatment protocols. Sometimes, these very protocols allow for extended access to medication—since there are no other drugs available, the study or the treatment regimen continues beyond the protocol’s original timeframe. Furthermore, having a center that is so open to collaboration often leads to donations or outreach from other medical sectors—whether private, state-run, military, or insurance-based—that may possess different resources. I am not just talking about medications; they might have access to diagnostic tests we lack—such as a PET scan or an advanced MRI—when our own options are insufficient. In short, having this center and these patients allows us to leverage a broader network: “I can share my expertise, but perhaps you can help me with this patient because I cannot secure this specific test or treatment here.” I hope this conveys that our specialized amyloidosis center—which I believe is highly successful—does not rely solely on cutting-edge technology, state-of-the-art facilities, massive financial backing, or an extraordinary array of treatments. Instead, it is driven by our commitment as physicians to provide patients with prompt, high-quality care. The key lies in identifying the people who help us triage and channel patients quickly, ensuring they receive appropriate attention from the right specialist within a reasonable timeframe. Mexico remains open to any questions, inquiries, or suggestions you may have, and I thank you very much for your attention.