ACMCRN
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#Arachnoiditis & Chronic Meningitis Collaborative Research Network
www.acmcrn.org
Arachnoiditis & Chronic Meningitis Collaborative Research Network leads the Arachnoiditis community collaborative efforts & works to bring new AI and Crowdsourcing tools towards further insights & understanding of Arachnoiditis and Chronic Meningitis.
04/26/2026
Looking for a quick look at who we are, and what we do?
We are an international Arachnoiditis/Chronic Meningitis non-profit(and serving associated conditions like Tarlov, EDS, CSF leak ). We started as a 3 member group in 2016, (Lori Verton, Louise Carbonneau Vermeiren and Dr Terri Lewis) and incorporated as a non-profit in Canada in 2018.
We have grown exponentially since then! Our peer support program, education and global outreach and research programs have been 90% volunteer run since its inception! We are people/patient powered and funded by private donations and support from other Arachnoiditis related foundations and groups.
More information:
www.acmcrn.org
See our ECRD2024 conference related Learning Toolbox here:
https://api.ltb.io/show/ACBIF
https://www.acmcrn.org/post/lidocaine-infusions-new-interest-in-older-treatment
Nothing touches the pain of your ? This older treatment may be what you need to try.
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02/28/2026
Today is Rare Disease Day!
If you live with Arachnoiditis, you know that "rare" usually means more than just a medical label. It often means feeling invisible, being misunderstood by doctors, or having to explain your symptoms over and over again.
At ACMCRN.org, we are working hard to change that. We believe everyone deserves to be seen and supported, no matter how rare their condition is.
We have a special page live for today and we would love for you to check it out. We even added some social media graphics you can download and share to help us raise awareness on your own pages!
How you can help today:
Check out our page and grab your share graphics: https://www.acmcrn.org/rare-disease-day
Support our mission with a donation: https://www.acmcrn.org/rare-disease-day-donation
Every gift helps us continue our work in advocacy, awareness, and research. Whether you can give a little or just share a graphic to help us spread the word, it makes a huge difference for our community. Let’s show the world that rare is actually everywhere.
02/27/2026
Only 2 more days until 2026!
Share ! Shareable media available for free here: https://www.acmcrn.org/rare-disease-day
It's nearly here! Rare Disease Day 2026! We have lots of great articles, videos, and media to share! Upload your choice today and help us share Arachnoiditis Awareness! https://www.acmcrn.org/rare-disease-day.
While Arachnoiditis may not be truly , it is most certainly !
02/26/2026
It's nearly here! Rare Disease Day 2026!
We have lots of great articles, videos, and media to share! Upload your choice today and help us share Arachnoiditis Awareness!
https://www.acmcrn.org/rare-disease-day.
While Arachnoiditis may not be truly , it is most certainly !
Could you be suffering with ?
www.acmcrn.org
02/26/2026
Only 2 more days until 2026!
Share ! Shareable media available for free here: https://www.acmcrn.org/rare-disease-day
We say is a
But we know it's just ."
We know that many "people with back and leg pain that makes it difficult to sit or stand for long periods, who have these unusual experiences of phantom "bee stings", feelings of electricity short circuits, flowing lava (each a form of parasthesia)" etc should be investigated for /Adhesive Arachnoiditis.
Those who have had physical trauma, Spinal pain interventions like epidural steroid injections, spinal surgery, spinal tape etc are especially at risk.
Find out more:
www.acmcrn.org ACMCRN
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