April 23, 2024

Navigating Mental Health and Community Support in Rare Neuroimmune Disorders

1 hour

This is the final episode of our three-part series on rare neuroimmune disorders. The episode highlights the vital work of the Siegel Rare Neuroimmune Association (SRNA), featuring conversations with Rebecca Whitney and Lydia Dubose about the resources and support available for individuals, families, and mental health professionals. You also continue to hear from community members, who share their journeys of navigating neuromyelitis optica spectrum disorder, transverse myelitis, and MOG antibody disease.

RESOURCES

Siegel Rare Neuroimmune Association (SRNA): An organization that supports families and individuals with rare neuroimmune diagnoses. SRNA provides resources, education, and community programs aimed at reducing isolation and improving the quality of life.

SRNA Resource Library: A comprehensive collection of information, including podcasts, videos from symposia, and informational sheets about each disorder, which can be a valuable tool for both affected individuals and healthcare professionals.

SRNA Myelitis Helpline: A helpline offering support and information to those diagnosed with rare neuroimmune disorders, their families, and healthcare professionals seeking more knowledge or resources.

Quality of Life Family Camp: An SRNA event designed for families affected by rare neuroimmune disorders, offering educational opportunities, fun activities, and a chance to connect with others who understand the unique challenges faced.

SRNA Medical Professional Network: A network of medical professionals with expertise or a focus on rare neuroimmune disorders. Joining this network can be beneficial for mental health providers looking to deepen their understanding and ability to support affected individuals.

SRNA Annual Symposium: An educational event where medical and mental health professionals, along with community members, can learn about the latest research, treatment options, and strategies for managing rare neuroimmune disorders.

Find Empathy Directory: A directory where psychologists and mental health providers specializing in health populations, including rare neuroimmune disorders, can list their services, making it easier for affected individuals to find supportive care.

Can Do Multiple Sclerosis: A partner organization mentioned in the podcast that offers health and wellness education programs for families living with multiple sclerosis, which are extending their expertise to include those affected by rare neuroimmune disorders.

Wondrium: Not directly related to rare neuroimmune disorders but mentioned as a resource for lifelong learning and mental stimulation, which can be a valuable tool for individuals looking to engage in educational content as a form of coping and personal growth.

CONTINUING EDUCATION

If you are a mental health professional and want CE credits for listening to this episode, click on this link: https://learn.findempathy.com/courses/Navigating-Mental-Health-and-Community-Support-Rare-Neuroimmune-Disorders

To find out more about all our CE courses visit https://findempathy.com/

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