This group is peer-led by a teen with a rare neuroimmune disorder, and this meeting will not be led by medical professionals. Attendees can come and ask questions of one another and SRNA.
Support Groups for Sharing, Learning, and Growing
It can be frightening and isolating to receive a rare neuroimmune disorder diagnosis, but you don’t have to be alone on your journey with ADEM, AFM, MOGAD, NMOSD, ON, or TM. For more than two decades, SRNA has helped inform, encourage, and empower thousands of people like you — and their loved ones — to live their best lives.
All SRNA support groups are free of charge. However, in this time of growing need, we welcome gifts in any amount to help sustain our programs and services. Click here to give.
Meetings are facilitated by volunteer Support Group Leaders who have completed our trainings. They are peer leaders with their own personal experiences with rare neuroimmune disorders.
However you’d like to participate – by listening, sharing your story, or bringing your questions – you are welcome. For online meetings, audio can be muted and you can use the chat function to participate.
Online meetings are not recorded, and while video is not required, it can be helpful to feel connected to one another by participating fully in the discussion.
Meetings are always confidential and designed to be spaces of support. Please be respectful—we’re all in this together
What are SRNA Support Groups?
SRNA support groups are meetings that give people with rare neuroimmune disorders a safe, welcoming place to share experiences, discuss coping skills, and offer each other hope. They are open to anyone who is dealing with a rare neuroimmune disorder. Our support groups are led by peers – which means that the person guiding the meeting has firsthand experience and can understand what you’re going through. Everyone is welcome, no matter your pathway of recovery or recovery status. Find your nearest Support Group Leader here.
Join Us Online
Support Group Meetings take place online each month, you can join by video on your computer or audio-only by phone. These groups can reach you wherever you are and you can join from anywhere in the world!
If you cannot attend a support group available during a time that works for you, the Peer Connect Program or SmartPatients may be support solutions for you.
The Peer Connect Program matches you one-to-one with a volunteer peer leader. They have completed SRNA’s training and conversations are confidential. Submit a request to connect with a peer and speak with someone who understands.
SRNA’s Smart Patients Online Health Community is a free online message board for caregivers and those who have a rare neuroimmune disorder.
Frequently Asked Questions
What can I expect at these meetings?
Participants are often people diagnosed with a rare neuroimmune disorder, but may also family members and loved ones of individuals diagnosed. You are welcome to listen and share, and with online meetings people can join from anywhere.
Why a Support Group?
Participation in a support group can be an empowering experience, helping members feel better prepared to cope with their unique situation, more able to confront their daily struggles, and more hopeful about their future.
When are the meetings offered?
Meetings are hosted by volunteer Support Group Leaders, and are offered based on the availability of these volunteer leaders. Typically, at least one or two meetings are offered monthly to all, with some meetings for specialized groups offered periodically. Find your nearest leader in SRNA’s Support Group Network.
Who do I talk to if I need extra support?
If anyone you know, or you yourself, needs extra support, please feel to reach out to your local Support Group Leader, message the meeting facilitator on the platform if you are joining an online meeting, find one-to-one support through the Peer Connect Program, or send an email to [email protected].
How do I share on online meetings?
If you would like to share, you can click “participants” and then the blue “raise hand” button and it will let the facilitator know you would like to share.
How can I verify meeting attendance?
To request meeting attendance verification, please fill out the RSVP form for your desired meeting. Verification will be provided to you automatically via email after submitting the form. Email us at [email protected] if you have any questions.
Are online meetings recorded?
To respect privacy, we do not allow meetings to be recorded by any attendee or facilitator. It is possible that screenshots of a screen may be taken, however, just as if an attendee took a picture at an in-person meeting. We do encourage all attendees to not take screenshots to be respectful and respect the confidentiality of each person attending.