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IN troduction About us 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. MAB Read More Organisations we're part of Read More

Become a member of Inflammatory Neuropathies UK Membership Registration The Members of Inflammatory Neuropathies UK are like shareholders - they help shape our direction, influence our decisions, and guide our priorities. We offer two types of Membership: Voting Members and Non-voting Members. Both are equally valued, but Voting Members play a more active role in the governance of the charity. By becoming a Voting Member, you'll be invited to vote at our Annual General Meeting (AGM) and other key events. In fact, one of the most significant moments in our history - the 2025 transition from GAIN to Inflammatory Neuropathies UK - was made official by our Voting Members. Membership is open to everyone and completely free. However, if you’d like to support our work, you’re also welcome to make a voluntary donation, either as a one-off or a regular gift. If you’re ready to join our community, simply complete the form below. If you have any questions about Membership, feel free to email us at hello@inflammatoryneuropathies.uk or call 01529 469910. We’d love to hear from you! Register or Renew membership

IN focus Latest Keep up to date with the charity and the wider world of Inflammatory Neuropathies. Visit our blogs for some easy to understand information on GBS and CIDP. Catch up on real stories from real people, and access an archive of Newsletters. Newsletters Monthly updates and quarterly newsletters - keep up to date with all things Inflammatory Neuropathy. Read More Your Stories One of the most powerful ways for us to spread awareness is via real life stories. Read More Blog About the conditions we support, and the thoughts and views of the Inflammatory Neuropathies UK team Read More

Newsletters One of the most important things we do as a charity is make sure we’re really connecting with you, our community. Every day, you put your trust in us. You open up about your worries, lean on us for support, share your stories, and generously give to our cause. That means the world to us, and as you're so open with us, it’s only right that we keep you fully in the loop about our activities and actions. With that in mind, we’ve got two newsletters we send out regularly to keep you posted on everything happening in the Inflammatory Neuropathies UK world. Our monthly newsletter is called IN brief . It's a quick read, usually a four-page snapshot, that keeps you in the know about what we’re working on and what’s coming up. Then there’s our quarterly newsletter, IN depth . This is about twenty pages long, and packed with updates, personal stories from our incredible supporters, and a real behind-the-scenes look at what’s been going on across the charity. If something’s happening at Inflammatory Neuropathies UK, you’ll hear about it there. Our latest newsletter can be enjoyed below, or downloaded by clicking here Or scroll down for previous editions of the newsletter Previous editions of our newsletter IN brief | June 25 | #1 IN brief | July 25 | #2 IN brief | August 25 | #3 IN brief | October 25 | #4 IN brief | November 25 #5 IN brief | January 26 | #6 IN brief | February 26 | #7 IN brief | April 26 | #8 IN brief | May 26 | #9 IN brief | July 26 | #10 INdepth | May 25 | #1 INdepth | September 25 | #2 INdepth | December 25 | #3 INdepth | March 26 | #4 INdepth | June 26 | #5

IN teract Get involved If you or someone you care about has been impacted by an Inflammatory Neuropathy, it’s natural that you might like to get involved with GAIN’s mission of raising awareness and support. Luckily, there’s all sorts of ways you can contribute your time, skills and experience that will hopefully suit any and all abilities. We’ve split these into a few helpful categories below, so scroll to find out how you can join the team, make kind donations, or get involved in exciting events. Is there something in mind you’d like to do to help but don’t see listed? Just get the office a quick call or email, we’d love to chat. Events We often have free supporter places available in major UK marathons, swims and other events. Claim your space, shirt and our support: Read More Become a Trustee Expertise in accounting, company secretary, HR, charity law or other Board level skills? Learn about becoming a Trustee. Read More Research Not only can your fundraising help us provide emotional support and practical advice, your support can also facilitate cutting edge research. Read More Fundraise We couldn't do what we do without the support of individuals, groups, and organisations. Click here to get invo lved. Read More Membership Registration Help shape our direction, influence our decisions, and guide our priorities. Become a free member, vote, and attend our AGM. Read More Volunteer We're a small but committed team. Each of our volunteers plays an integral role in our support, from peer support to Get Together facilitators. Read More 200 Club 200 Club is an easy way to raise funds for our support of conditions while at the same time offering you the chance to win monthly cash prizes. Read More

​If you've been diagnosed recently with an Inflammatory Neuropathy, or are living with a historic diagnosis, you may wish to seek out some specialist expertise. You can speak with your GP or consultant about being referred to one of these specialists, or get in touch with a consultant’s secretary directly for further information. Specialist Inflammatory Neuropathies Consultants If you've been diagnosed recently with an Inflammatory Neuropathy, or are living with a historic diagnosis, you may wish to seek out some specialist expertise. This map shows Specialist Inflammatory Neuropathies Consultants across the UK which you may be referred to via your own Neurologist.

Volunteer We are a small charity and, as such, really depend on the incredible help we get from our volunteers. This amazing team of people work with us so we can better raise awareness, reach and support more people and, ultimately, realise our goals. Most of our volunteers have lived experience of GBS, CIDP, MMN or a related condition, but, in order to do more, we need more people to help. Could that be you? If you feel you can help then please get in touch - there are a myriad of ways volunteers can contribute to our work; a few of which are listed below. Providing Peer Support Connecting with people impacted by GBS, CIDP, and other Inflammatory Neuropathies. Using your lived experience to provide information, advice, and guidance. Facilitating and Supporting a Local Get Together Organise a space where people can come together and mutually support each other over a cup of tea. Being a Local Champion Be our representative in your local area, You can do this by linking into local clinical facilities and community groups and supporting local people impacted by any of the Inflammatory Neuropathies. Being an Online Champion Be our representative online. Support those impacted by GBS, CIDP, or other conditions in online forums and meetings. Raising Awareness Word of mouth speaks volumes. Support us by raising awareness about Inflammatory Neuropathies - and us. The more people know, the more they too can help. Research Support Data is king. And we need your help in tasks like data collection. As you can see our needs are very varied. Just choose what you feel you would enjoy the most. We will do all we can to help by being super flexible regarding time commitments and also helping you by providing the following: Induction and training Ongoing support and supervision An annual appraisal Regular volunteers meetings and updates Resources and materials Access to our team when you need them We hope you will join us. If you are interested, simply fill in the form below.

Inflammatory Neuropathies UK create short and easy to access blogs that describe in understandable, simple language, the impact of Guillain-Barré syndrome (GBS), CIDP, MMN, and other Inflammatory Neuropathies. We also use this section for our Chief Execs views on the latest in UK policy that impacts people with these conditions, and personal, real life stories of people living with GBS, CIDP, MMN and more in the UK. Blogs The latest news and opinions from the Inflammatory Neuropathies UK team. We also have a blog series where we take an accessible look at the conditions we support. These started last year with GBS, and our CIDP blog series came to an end in April 2025. Filter the blogs via: GBS Blog Series CIDP Blog Series Looking Beyond the Diagnosis: Why the New Inflammatory Neuropathies Report Matters A new European white paper has put the spotlight on Inflammatory Neuropathies and, reading it, we found ourselves thinking, "We've been saying this for years." Welfare reform should be about people, not paperwork The interim findings from the government's Timms Review into Personal Independence Payments (PIP) are out, but what do they mean for people impacted by Inflammatory Neuropathies Community is about more than where you live. It’s about who you are, and who you link with Community means something different to different people. This isn't an argument against place based communities, it's an argument against forgetting communities of interest Looking Back, Looking Forward: What Our Impact Report Tells Us Our new Impact Report is out now. But what does it mean, what have we done, and what are we doing. Responding to consultations: Making sure the Inflammatory Neuropathies Community is always heard Why do we respond to public consultations. Because you need to be heard. New report on Living with an Inflammatory Neuropathy We had some excellent results from the My Neuro Survey findings, but we wanted to dig deeper. 1 2 3 4 5

Frequently asked questions Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat. Duis aute irure dolor in reprehenderit in voluptate velit esse cillum dolore eu fugiat nulla pariatur. Excepteur sint occaecat cupidatat non proident, sunt in culpa qui officia deserunt mollit anim id est laborum CIDP IvIg Double Vision Diagnosis CIDP & AIDP Question 3 Question 4 Question 5 etc CIDP Ivig Double Vision One of our members with CIDP has been struggling with double vision for the last few days following his latest treatment of IvIg. He has been referred by his optician to an ophthalmologist, but unfortunately, has to wait two weeks before he can be seen. He has been receiving IvIg for two years, and this is the first time the problem has occurred. He has emailed his neurologist but hasn’t had a response yet, and in the meantime was wondering if it was something we were familiar with, as he is quite concerned. Is double vision a recognised symptom of CIDP / treatment with IvIg, and if so, is it likely to be long term or something that should pass relatively quickly? Is it something that spectacles could help correct or is he stuck with it for as long as it lasts? Answer: He does need to be seen. It could be a viscosity problem with the ivig. It may well settle. Sometimes prism glasses help but a diagnosis is needed. Diagnosis CIDP & AIDP We have come across two people this week who have been diagnosed with CIDP and AIDP concurrently. Is this something you’ve encountered? Answer: A few patients get recurrent attacks of GBS with recovery in between. I suspect this is all one disease not two but It is what you call it is tricky. Question 3 Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat. Answer: Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat. Duis aute irure dolor in reprehenderit in voluptate velit esse cillum dolore eu fugiat nulla pariatur. Excepteur sint occaecat cupidatat non proident, sunt in culpa qui officia deserunt mollit anim id est laborum Question 4 Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat. Answer: Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat. Duis aute irure dolor in reprehenderit in voluptate velit esse cillum dolore eu fugiat nulla pariatur. Excepteur sint occaecat cupidatat non proident, sunt in culpa qui officia deserunt mollit anim id est laborum Question 5 Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat. Answer: Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat. Duis aute irure dolor in reprehenderit in voluptate velit esse cillum dolore eu fugiat nulla pariatur. Excepteur sint occaecat cupidatat non proident, sunt in culpa qui officia deserunt mollit anim id est laborum

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Privacy Policy Privacy Notice (Plain-English) For Website & Service Users Inflammatory Neuropathies UK – Privacy Notice Last updated: 12th August 2025 Who we are We’re Inflammatory Neuropathies UK , the only UK charity dedicated to supporting people impacted by Guillain-Barré Syndrome (GBS), CIDP, MMN , and other Inflammatory Neuropathies . We provide information, support, grants, local groups, online forums, fund research, and advocate and campaign on behalf of the Inflammatory Neuropathies community. Your privacy matters to us We promise to respect your personal information, keep it safe, and not share it with anyone unless it’s necessary and lawful. The personal information we collect Depending on how you interact with us, we may collect: Your contact details (name, address, phone, email) Information about your condition or experience (only if you choose to share this) Records of your donations or fundraising Messages you send to us Details you post in our forums or groups Information for grant applications Your communication preferences Some of this may be sensitive health information, which we only collect with your clear consent. How we use your information We use your information to: Provide support services Run local groups and online forums Send updates you’ve asked for Administer grants and donations (including Gift Aid) Carry out research (with your permission) Improve our services Our legal reasons for using your data We only process your data if: You have given us permission We need to provide a service you’ve asked for We have a legal duty (e.g., Gift Aid records) It’s in our legitimate interest as a charity, and your rights aren’t harmed Keeping your data safe We keep your data secure using encryption, passwords, and restricted access. We train our volunteers and staff to handle your information carefully. How long we keep it We only keep your data for as long as needed for the purpose it was collected and to meet legal requirements. For example, Gift Aid records are kept for 6 years. Your rights You have the right to: See the information we hold about you Ask us to correct it Ask us to delete it Change your contact preferences Withdraw consent (if we’re processing based on consent) Email us at hello@inflammatoryneuropathies.uk if you want to make a request. If you have a concern You can contact our Data Protection Officer at rich@inflammatoryneuropathies.uk or 01529 469910. You can also complain to the Information Commissioner’s Office (ICO) at www.ico.org.uk.

Share your experience One of the hardest challenges Inflammatory Neuropathies UK has ahead of us is getting our voices heard. There are thousands of other important charities all competing for the same eyes and ears. Unfortunately, we don't have a huge bank of pictures to use on our socials, and often have to use stock images. These don't authentically tell your stories, and because of that, they get lost in the mix (case in point, just look at the header image of this page!). To stand out we urgently need: Real experiences A media bank of real people to use on our socials Heart-pulling quotes And things to make the general public stop and look again If you've got a story to tell about your experience with an inflammatory neuropathy - be it diagnosis to treatment, or life with it now, please get in touch. We can host it as a blog. Or, if you can provide some images for use, again from treatment through to life now (even if it's a big cheesy selfie), we'd gratefully receive them. Send an email to hello@inflammatoryneuropathies.uk Please also read and (if you agree) accept our consent form so we can use these images.