Siegel Rare Neuroimmune Association
Website
Organization Location
1787 Sutter Parkway Powell, OH 43065-8806
Description
Who we are…
The Siegel Rare Neuroimmune Association (SRNA) is a not-for-profit international organization dedicated to the support of children, adolescents, and adults with a spectrum of rare neuroimmune disorders including: Acute Disseminated Encephalomyelitis (ADEM), Acute Flaccid Myelitis (AFM), MOG Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON) and Transverse Myelitis (TM).
Founded in 1994 by family members and individuals with these diagnoses, SRNA (formerly the Transverse Myelitis association — read more about the change here) was incorporated on November 25, 1996 in the state of Washington and we became a 501(c)(3) organization on December 9, 1996.
What we do…
We support individuals living with rare neuroimmune diagnoses and their families, promote awareness to empower patients, families, clinicians and scientists, build a collaborative and dedicated clinical care network and help advance scientific understanding and research.
Our Story…
Sunday, July 31, 1994 at 5:30 in the evening… Pauline fell to the floor with excruciating pain in her lower back and was immediately and completely paralyzed below her waist. She spent nine hours in an emergency room.
Read More…
How we do it…
We are an information resource on rare neuroimmune disorders for our community through our website, newsletters, blogs, Ask The Expert Podcast Series, educational events such as symposia and workshops for the exchange of current and up-to-date information regarding the diagnosis, treatment and management of these disorders. We offer a support network between persons with these disorders through local support groups located throughout the world and through our partnership with Smart Patients, while also organizing annual quality of life programs such as family camps for children with these disorders and their families. We support the post-residency training of clinicians committed to careers in academic medicine specializing in these disorders, provide grant support to academic Centers of Excellence and fund novel pilot research ideas.
Our mission is…
To support and advocate for individuals and their families diagnosed with rare neuroimmune disorders of the central nervous system
To promote awareness and to empower individuals with rare neuroimmune diagnoses, families, clinicians, and scientists through education programs and publications
To advance the scientific understanding of and therapy development for these rare disorders by supporting the training of clinician-scientists dedicated to these rare diseases and by supporting critical clinical research
Contact
Contact email - [email protected]
Phone - +1 (855) 380-3330
Instagram - https://www.instagram.com/wearesrna/
Facebook - https://www.facebook.com/wearesrna/
Upcoming events
- – (UTC)
- Young Adults Group
- – (EST)
- Georgia Support Group Meeting
- – (EST)
- Wings of Hope Soar Together: A Dinner and Gala Fundraiser
Past events
- through (CDT)
- 2024RNDS
- – (CDT)
- 2024 Northeast Walk-Run-N-Roll
- – (CDT)
- SRNA New Member Welcome Meeting
- through (CDT)
- 2024 South Central Walk-Run-N-Roll
- – (CDT)
- 2024 South Central Walk-Run-N-Roll
- – (CDT)
- Young Adults Group
- – (CDT)
- United Kingdom Support Group Meeting
- – (EDT)
- Online Support Group Meeting
- – (EDT)
- Georgia Support Group Meeting