Arizona Tribune - Siegel Rare Neuroimmune Association Hosts 2024RNDS

The Siegel Rare Neuroimmune Association's (SRNA) 2024 Rare Neuroimmune Disorder Symposium (RNDS), held in person and online, brought together people diagnosed with rare neuroimmune disorders, their families and caregivers, and medical professionals who specialize in these disorders. Many sessions were co-moderated by people with these conditions, their care partners and physician experts, fostering a mutual learning experience where insights flowed both ways to enrich understanding and connection across the entire community.

Event highlights include:

• Sessions that focused on diagnosis and acute treatment of rare neuroimmune disorders (RNDs). A panel of people with these conditions compared their experiences of initial symptoms, acute treatment and diagnosis. A physician panel followed and discussed steps a healthcare team may take to correctly diagnose individuals.

• A panel where attendees learned about the whole-person experience of living with an RND including management of symptoms like bowel, bladder and sexual dysfunction, vision issues, neuropathic pain and spasticity (uncontrolled, involuntary movement).

• A breakout session for care partners about maintaining mental and physical health while caring for a loved one. There also were breakout groups where people with similar diagnoses gathered, asked questions and engaged with clinician-scientists.

In rare neuroimmune disorders, a person's immune system mistakenly attacks the brain, spinal cord and/or optic nerves. This can happen without warning and has devastating, lifelong consequences such as paralysis, vision loss, chronic pain, cognitive issues and breathing difficulties. What makes these disorders even more challenging is that they can recur, meaning that those who are affected may face these difficulties multiple times throughout their lives.

The symposium also marked SRNA's 30th year of driving research, education and awareness, and improving the quality of life of individuals with RNDs. SRNA was founded in 1994 by Sandy Siegel and his late wife Pauline after she was diagnosed with transverse myelitis (TM) and they could not find any information about it. What started 30 years ago with Sandy and Pauline at their kitchen table, fielding calls from anyone affected by an RND, has grown into an international organization encompassing support for those affected by acute disseminated encephalomyelitis, acute flaccid myelitis, MOG antibody disease, neuromyelitis optica spectrum disorder, optic neuritis and transverse myelitis.

"We discussed diagnostic advancements and treatments that we could never have dreamed of 30 years ago," Siegel said. "The medical and clinical innovations that have been developed can bring hope to all who have rare neuroimmune disorders ─ hope that we didn't have even 15 years ago. None of this would've happened without Pauline."

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The Siegel Rare Neuroimmune Association is a non-profit organization dedicated to the support of people with acute disseminated encephalomyelitis, acute flaccid myelitis, MOG antibody disease, neuromyelitis optical spectrum disorder, optic neuritis, and transverse myelitis. Our goal is to improve the quality of life of individuals with these rare neuroimmune disorders. Visit our website to learn more.

Contact Information

GG deFiebre, PhD
[email protected]
855-380-3330

SOURCE: Siegel Rare Neuroimmune Association

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