The physician neurologist and neuroimmunologist at Cedars Sinai Medical Center discussed RNDS 2023, an educational event for Spanish-speaking patients with rare neuroimmune disorders.
Many of the scientific conferences put on in today’s society are mainly geared towards English-speaking patients and offer little assistance for those in Latinx/Spanish-speaking countries who may be unfamiliar with certain terms. After hosting their original educational event in early November, the Seigel Rare Neuroimmune Association (SRNA) is putting on another RNDS symposium geared towards Spanish-speaking patients. The virtual event, held on December 2nd, will be open to all those diagnosed with rare neuroimmunological disorders, their families, and caregivers.
The one-of-a-kind symposium brings together the rare neuroimmune community to better educate about the treatment and care for these disorders, including the latest innovations at patients’ disposal. Before the event, NeurologyLive® sat down with event organizer Paula Barreras, MD, PhD, a physician neurologist and neuroimmunologist at Cedars Sinai Medical Center, who detailed more about the RNDS and what it entails. As part of a new iteration of NeuroVoices, Barreras discussed the importance of reaching the Spanish-speaking community and providing them with educational resources that are vital to their disorders. Additionally, she provided context on the conversations between these patients, the clinician-patient relationship, and ways to continue to support this patient population going forward.
Paula Barreras, MD, PhD: This is our virtual symposium focused on broader neurological disorders, including transverse myelitis and MOG associated disease and AFM as well. That's a lot of acronyms, but basically all of these rare neurological disorders. And we're bringing experts in these diseases that speak Spanish. And we wanted to make an event for the Spanish-speaking community, patients, and physicians with an interest in learning more about these disorders are welcome.
I think most of the academic conferences and educational materials that exist about these rare disorders have been focused on the English-speaking community. I definitely think we can do more. With engaging our Spanish-speaking communities and bringing these resources to them. I think most of the academic conferences don't involve patients in general. This is a very special event where patients and their caregivers and families can join and learn together about these disorders. I think the doctor-patient relationship in the Spanish-speaking communities is usually very good, but we definitely need more access. Since these are rare disorders. There are not many experts that speak Spanish that have expertise in these diseases. And we're trying to make an effort to bring the experts to the patients and to the local neurologist as well.
It does change, you know, every patient is different. But we have seen that in the Hispanic population, specifically, some of these rare neurological disorders can be more severe. And I think there's a factor of the lack of timely access to care that has an impact on final outcomes. We know that sometimes these patients do a little bit worse than their Caucasian counterparts. And we're trying to narrow that gap. And understand what factors drive that better.
I think we can reach out, you know, learn about what resources are available to patients and offer those resources. SSRNA, in particular, is a great resource for patients with rare immunological diseases, they have a great website with occasional material, but there are resources as well out there, that if physicians educate themselves, in what resources they can offer them, patients will learn through their physicians, where to go. And, listen, I think people have different ways in which they communicate and cultural and social factors affect the way they relate to their problems. And I think if we just all listen a little bit better, then we can better cater advice to the needs of our patients.
Absolutely, I think getting a new diagnosis of a rare neurological disease is very scary. And often, the initial hospitalization involves a lot of testing, a lot of acute treatment teams that come and go, so patients leave the hospital not really understanding what happened. And often when they come to the specialist office, we assume, or a lot of physicians assume, that the patient really understands their diagnosis and is ready to have a treatment plan conversation. And often the first question is, explain to me again, what is it that I have? What happened? They told me I had my life; this is not the same as anymore, what is my life? I think the conversation that should happen first is just to stop and try to understand how much the patient actually knows about what happened to them, you know, and make our best effort to explain as much as we can until they fully understand, you know, the sequence of events, and what are these disorders? And then in that way, they can make better decisions for themselves.
This is an event that is reaching out to patients, their caregivers, families, but it's also open to neurologists that have an interest in learning more about rare neuroimmunolgoical disorders. The symposium is virtual. It's very easy to register, through the SRNA website. It's on Saturday, December 2, starting around noon, to 4 pm. It's in the afternoon, and there will be an opportunity for questions and answers from physicians and patients. And the agenda involves experts in these disorders, including experts in NMO (Neuromyelitis optica), we're going go over the latest clinical trials and advances in therapeutics. And it started with an overview of what are these disorders and what causes them. And the interaction between the immune system and the nervous system, I think will be a good experience for everyone. And hopefully, it will be a way to bring the resources back to our Spanish-speaking community.
Absolutely. I think we need to understand better why some of these communities do worse when, you know, we treat them with the same medications and whether that's access to care barriers or genetic factors are all determinants I think we need to understand that soon to be able to tackle those barriers and, and help this community. We should absolutely focus on that.
Transcript edited by artificial intelligence. For those interested in the event, click here.