The Siegel Rare Neuroimmune Association Creates First-Ever Online Micro-Course for People With Rare Neuroimmune Disorders
The online learning program reflects organization’s dedication to empowering individuals and families affected by these conditions with knowledge and support
POWELL, OH / ACCESSWIRE / June 20, 2024 / The Siegel Rare Neuroimmune Association (SRNA) has released several new courses as part of its unique online learning program. This innovative educational series provides a comprehensive understanding of rare neuroimmune disorders. Every course includes content developed with medical experts.
The program:
- Improves knowledge and health literacy about rare neuroimmune disorders among individuals and/or their care partners impacted by these conditions.
- Reduces uncertainty about the diagnoses by educating individuals about diagnostic tools and management.
- Provides resources to help people have a meaningful discussion with their healthcare practitioner about their diagnosis and advocate for the best care.
The first course, “Understanding Rare Neuroimmune Disorders,” was released in February. Participants learn about the immune system, the nervous system, and the similarities and differences between each disorder.
Additional courses each focus on one condition – acute disseminated encephalomyelitis (ADEM), acute flaccid myelitis (AFM), MOG antibody disease (MOGAD), neuromyelitis optica spectrum disorder (NMOSD), optic neuritis (ON), and transverse myelitis (TM). These in-depth courses answer questions including:
- What is the disorder?
- What symptoms are present at onset?
- Who is most likely to be affected by the disorder?
- How is the disorder acutely treated?
- What is the prognosis for those living with the disorder?
Each course features videos with helpful animations, written text, and knowledge checks. The courses are accessible via screen reader for those who are blind or have low vision.
The courses are for SRNA members. Membership is free and opens the door to a wealth of information, support, and education.
Understanding rare neuroimmune disorders
In rare neuroimmune disorders, a person’s immune system mistakenly attacks the brain, spinal cord and/or optic nerves. These disorders have devastating lifelong impacts and often cause permanent complications like difficulty breathing, depression, vision loss, persistent pain, and paralysis. They can affect individuals of any age. People who are diagnosed have no warning this life-changing event will happen. These disorders can relapse so people may face this crisis multiple times. Progress has been made in diagnosing and treating these disorders, but no cure exists.
“We have learned from our community interactions that educating individuals impacted by rare neuroimmune disorders about the different diagnoses is key for better management and long-term care,” says Executive Director Chitra Krishnan.
This year is SRNA’s 30th anniversary, and SRNA encourages people to learn more about rare neuroimmune disorders and their lifelong impact. Visit the SRNA website and Facebook, LinkedIn and Instagram for 30th-anniversary education, advocacy events, and information.
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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 optica 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
info@wearesrna.org
855-380-3330
SOURCE: Siegel Rare Neuroimmune Association
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