INtroduction 

Inflammatory Neuropathies UK is the only UK charity exclusively dedicated to supporting people living with approximately forty conditions collectively known as Inflammatory Neuropathies. The most common conditions we support are Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP), and Multifocal Motor Neuropathy (MMN).

We also support people living with POEMS, Lewis-Sumner/MADSAM, along with vasculitis neuropathies (when blood vessels become inflamed) like Wegener's Vasculitis and related conditions such as Sjögren's syndrome.  We can help those with an inflammatory neuropathy associated with infections such as HIV neuropathies and Leprosy. 

 

 What is an Inflammatory Neuropathy? 

​

To help understand what we do, it's useful to know what an Inflammatory Neuropathy is. 

 

Neuro means string, or nerve. Pathy, in the medical world, refers to a disorder or system of medicine. So Neuropathy simply means a condition impacting the nerves. An Inflammatory Neuropathy is when the Peripheral Nerves are damaged or impacted through inflammation (often caused by an autoimmune response - when the immune system misfires and attacks your body rather than illness). 

 

Your brain and spine are called the Central Nervous System. The Peripheral Nervous System is the network of nerves carrying messages to and from the CNS across the body. They work together as the Nervous System. 

Depending on the nerves impacted and the condition, an Inflammatory Neuropathy can cause pain, numbness, weakness, impaired coordination, or even paralysis and death. 

​​

 What we do 

​

We support people living with these rare conditions by providing medically sourced information, granting access to trained Peer Support volunteers, distributing personal grants, hosting an emotional support service, raising awareness, advocating politically, and commissioning research. We run monthly Get Togethers, and host a private and moderated Facebook group with over 4,000 members. 

​

 Our history 

​

The Inflammatory Neuropathies UK name and website came into being on May 1st 2025, however our history stretches back over 40 years. In 1985, our charity was founded by Glennys Sanders after she faced Guillain-Barré Syndrome with little to no support network.

​

From her home, she set out on a journey that would span four decades of care and support. Initially known as the Guillain-Barré Syndrome Support Group, the charity would eventually broaden its reach and become GAIN (Guillain-Barré & Associated Inflammatory Neuropathies).

 

After consulting with members, service users, and our medical advisory board, it became apparent that the name GAIN was no longer fit for purpose in 2024. "Associated Inflammatory Neuropathies" just wasn't enough to include those living with CIDP and MMN.

 

After extensive consultation, it was decided that Inflammatory Neuropathies UK was the correct and inclusive choice to encapsulate all that we do. 

We operate out of Glennys Sanders House, named after our founder, and still enjoy frequent visits and chats with the person who made this all possible four decades ago.