Learn how to set up a good fundraising page to help support Inflammatory Neuropathies UK. IN simple steps So you've decided you want to raise money to help Inflammatory Neuropathies UK support others. First, let us take a moment to say thank you . When we say we couldn't do it without you - it's not a throwaway comment, it's a statement of absolute fact. We could not do what we do without your help. With that in mind, we want to help you maximise your fundraising abilities, and the first part of that is setting up an excellent fundraising page. Let us guide you through a few simple steps to success. If, at any point, you think you could do with a little help in writing your story or getting better pictures - reach out to us. We're more than happy to help. It's the least we can do! hello@inflammatoryneuropathies.uk JustGiving 1. Visit JustGiving You can find us right here: justgiving.com/gbs Once you're on the page, look for a blue button called "Fundraise For Us", it should be at the top of the page. Click it! 2. Are you fundraising in memory of someone? If you're doing this in memory of someone special, hit "yes". You'll be prompted to share their name here. If you're not, hit "no". Then, in both cases.. Hit next. 3. Are you taking part in an activity? Take a moment and think about what you're doing. If you're taking on an established event like the London Marathon or Kiltwalk , click "I'm taking part in an event" and hit next. You'll then be able to search for event. If your event is there, click it and hit "Next", if it's not there, click "Create your own activity". If you're organising your own activity , or can't find yours on the established list, hit "I'm doing my own activity" and click next. You'll be asked to enter the type of activity (run, walk for example), then a name for the activity (Bake Sale for Inflammatory Neuropathies UK for example). You can also put in a date here if relevant. If you're not running an event , but would like to fundraise for a birthday, wedding or similar, click "Just Fundraising" and enter the details requested. Hit next. 4. What's your target? How much would you like to raise? You can change your target at any point, but having a goal helps encourage your supporters to donate. In fact, it increases donations by 17%. Hit next. 5. Personalise Your Page Writing your story can help raise 65% more ! It's a space to explain why you're doing what you're doing. If you had or have one of the conditions we support, perhaps discuss diagnosis or how it impacts you, and how in turn that impacts the challenge. If you're doing it in memory of someone special, tell us a little about them, we'd love to hear about who they were and what they meant to you. Hit next. 6. Page Cover A picture tells 1000 words, it also helps raise 23% more. Your photo is the first thing they will see on your page, and will be what people see when you share your story on social media. JustGiving recommend the more the merrier, something bold, and standout. Hit next. 7. Finalise Take a moment to read over the summary and make sure you've said everything you want to say. Let us know if we can keep in touch and then... Launch! You're all done... well nearly. 8. Share it You're doing something amazing, so don't be shy - share it with the world. Post on socials, encourage people who donate to share the link, and, if possible, share it via email or work noticeboards. 9. Local Press Local press love a good fundraising story, reach out to them to tell them what you're up to and why. They may just come out for a picture and you can share your page with your whole area! 10. Keep updating Pages that see updates - be it fitness tracker screenshots or progress check ins - often earn up to 8% more. Check in on JustGiving, treat it like a diary or another social media channel and let the world know what you're up to and how you're getting on.

Events MARCH 15 (2026) GetPRO Bath Half Claim a Free Place APRIL 12 (2026) Brighton Marathon Weekend Claim a Free Place GetPRO Bath Half Half Marathon We've got some amazing city runs for you, but this one about tops it! Fancy running through the UK's only World Heritage City along traffic free streets? Well take on the Bath Half Marathon! It all kicks off at Royal Victoria Park and, PB chasers - your attention please, takes place on a lovely fast and flat road. By claiming one of our free runner places (and agreeing to raise sponsorship), you'll get your spot in this amazing run, along with a finishers shirt and medal, tracking and training, event photography, timed results, and much more. The Bath Half is one of our most popular events, so if you want to claim one of our limited spots, get in touch soon! hello@inflammatoryneuropathies.uk Brighton Marathon Weekend Always a firm favourite in our community, and the running community in general - it's the Brighton Marathon Weekend! It's the UK's third-largest marathon, and we've only gone and got a few free runner places in it! To claim them? Just email us and agree to raise funds.. simple (and you've got to run a marathon, so not entirely simple, but we believe in you!). You'll get a finishers shirt and medal, photos, results, access to training and tracking apps and much more. There'll also be pacers available if you've a time goal in mind from 3:00 to 7:00 hours, bag drop, plenty of toilets and drinks, and much more. Sound like a good day out? Contact: hello@inflammatoryneuropathies.uk

Peer Support 1-to-1 support from someone with lived experience Learning to cope with a new condition can be difficult to say the least. It’s a journey into the unknown especially when it’s something you probably never even knew existed. One of the best ways to learn how to cope or adapt to a new way of living is by talking with someone who has lived experience. Get in touch today, and we can match you with one of our amazing volunteers, all of whom have experienced inflammatory neuropathy themselves and know exactly what you are going through. Because it isn’t a one size fits all, we carefully select a volunteer for you based not only on the specific condition, but also taking into account age, gender, location, life experience, and, of course, your preferences. You can chat via a phone-call , face-to-face video call (think Zoom, Teams, WhatsApp), or exchange messages/ emails . It's all about choice and what makes you, and our volunteers, comfortable and safe. If you would like to find out more about Peer Support, or be matched with a volunteer, then contact the office on 01529 469910 or 0800 374803 , or email on hello@inflammatoryneuropathies.uk We couldn’t provide our Peer Support service without our incredible volunteer team. If you think you could support someone with GBS, CIDP, or another condition and would like to volunteer, then please get in touch and put your name forward.

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

Health Emotional Support Read More Physio (coming soon) Read More Diet Read More Emotional Health Support There is no question that our physical health and our mental health are inextricably linked. Therefore, it follows that anyone with an Inflammatory Neuropathy is probably going through emotional challenges as well - and these can affect work, relationships, our sense of who we are and our wellbeing. In conjunction with Rareminds, we offer a free emotional support service which is available to anyone who is over 18 and has been impacted by an Inflammatory Neuropathy. The service provides a safe and confidential space to talk through issues such as anxiety, low mood, isolation, unpredictable symptoms, or adjusting to life with a chronic condition. Up to 12 confidential sessions may be taken up, by video or phone, with both daytime and evening appointments available. The service is led by Dr. Stephanie Yin, a psychotherapist and psychologist with professional and lived experience of rare conditions, along with other members of the Rareminds team who have undertaken additional training on Counselling for Rare Diseases. To arrange an initial consultation, email stephanie@rareminds.org , using the subject line “The Inflammatory Neuropathies UK Counselling Service.” We know talking about mental health can be difficult and, for some, acknowledging that you could do with a chat can be a big step. But, as this is a confidential service, we do not have access to your details. Your time and conversations with Stephanie or Poppy are entirely private. If you feel you, or someone you know, could use counselling around living with an Inflammatory Neuropathy, get in touch with Stephanie. Physio After announcing our Emotional Support service to support mental health, Inflammatory Neuropathies UK's next goal is to support physical health. Please check back for more information on our future physio services. Diet A great place to start learning about what to eat is through the NHS Eatwell Guide . It shows how much of what we eat should come from each food group to achieve a healthy, balanced diet. Importantly, it applies to most of us regardless of dietary preferences, weights, ages, and ethnic origins. Please note, if you’re someone with special dietary requirements or medical needs, you may wish to chat with a registered dietitian to ensure the guide fits your needs. Two things to keep in mind though. Don’t let perfect be the enemy of good. We know recovering from GBS or living with a chronic condition can bring mental challenges along with physical symptoms. While we encourage you to cut down on sugar and eat your five fruits and vegetables a day, remember to allow a treat here and there. Don’t beat yourself up if you don’t get the nutritional balance right with every meal, just try and balance it out through the week. Don’t be afraid or embarrassed to ask for help. The cost of living has impacted all of us, and for those living with conditions that can impact their ability to work, this can cause significant strain. Citizens Advice have produced some helpful pages that cover accessing foodbanks, along with crisis grants and benefits, and more. Click the link closest to your region to learn more. England Scotland Wales Northern Ireland The EatWell Guide The guide Try to eat your 5 fruits and vegetables a day but remember fruit juice should be limited to 150ml (about 5.07 oz) a day to avoid too much sugar. Sugar is not needed in our diet, so should be eaten less often and in smaller amounts. A sweet treat is still allowed though! Remember to drink 6-8 glasses of fluid a day. Water, low-fat milks, low-sugar/sugar free drinks, along with tea and coffee all count. Starchy, fibrous food should make up over a third of what we eat – think high fibre or wholegrain varieties of pasta and bread. Add protein to your diet through fish (aim at least two portions of fish a week, one of which being an oily fish such as salmon, sardines or mackerel – you’ll get a lot of Omega 3 from these which helps reduce inflammation) or lean cuts of meat and mince while cutting down on red and processed meat. Don’t eat meat? No problem, think pules such as beans, peas, and lentils. They’re low in fat and help your fibre goals. Another great source of protein is dairy, or dairy alternatives such as soya. Milk, cheese, yogurt and fromage frais provide protein and are a strong source of calcium. Cook with vegetable, rapeseed, olive, and sunflower oils, these are unsaturated fats and therefore healthier. Though they should still be eaten in small amounts as they are high in energy (calories). Speaking of calories, women should have around 2,000 calories a day, and men should have around 2,500. However, this varies from person to person and can depend on how active you are. Apps like MyFitnessPal can help you track calories through the day and can serve as a food diary. When you’re not feeling great, you may find yourself more sensitive to certain foods. Being able to identify what does not agree with you through a diary may be beneficial for you.

Win up to £25,000 each at just £1 per entry! IN luck Play our lotteries Win up to £25,000 every week while supporting Inflammatory Neuropathies UK! Keep reading, or click here to scroll to our other lottery - North Kesteven Lottery . Through our trusted provider, Unity Lottery, you can win a massive jackpot for just £1. Simply click the play link below, and pick how many £1 entries you'd like to play each week, fill in your details, and then you're in the game. Each Friday, a 6 digit winning number is randomly generated via a Gambling Commission approved Random Number Generator, and if your lucky numbers come up you'll walk away with a prize. The best bit is you don't need all 6 numbers to win a prize: 3 digit match = 5 entries into the next draw 4 digit match = £25 5 digit match = £1,000 6 digit match = £25,000 Play by clicking here Players must be 18+ Learn more about the game by visiting: www.unitylottery.co.uk/rules Gambling can be addictive, for help and access to support, please visit: www.gambleaware.org/home For further information, visiting the Gambling Commission: www.gamblingcommission.gov.uk Here's how your entry fee is broken down: Us=50% Prizes=18% Expenses=32% Your chances to win are: 3 digit match = 1 in 69 4 digit match = 1 in 823 5 digit match = 1 in 18,518 6 digit match = 1 in 1,000,000 Unity is administered by Sterling Management Centre Limited, licensed and regulated in Great Britain by The Gambling Commission under account number 3137 North Kesteven Lottery Win up to £25,000 every week while supporting Inflammatory Neuropathies UK through the North Kesteven Lottery. Drawn on a Saturday and at just £1 a ticket, your weekend could kick off with a true bang with £25,000. Not only that, you can enter a super draw to win a £2,000 luxury getaway, plus £2,000 spending money. Winners will be notified by email. 2 digit match = 3 extra tickets 3 digit match = £25 4 digit match = £250 5 digit match = £2,000 6 digit match = £25,000 Play by clicking here Players must be 18+ For the rules of the game, visit www.nklottery.co.uk/game-rules Gambling can be addictive, for help and access to support, please visit: www.gambleaware.org/home For further information, visiting the Gambling Commission: www.gamblingcommission.gov.uk Your entry money is broken down like this 50% to your chosen cause (in this case Inflammatory Neuropathies UK), 20% goes to admin and VAT, with a further 20% going to the prize fund. We're happy to report that 10% also goes to other good causes. This means that you're supporting two causes with one entry. Your chances to win are: 3 digit match = 1 in 56 3 digit match = 1 in 556 4 digit match = 1 in 5,556 5 digit match = 1 in 55,556 6 digit match = 1 in 1,000,000 1.1 North Kesteven Lottery ("the Lottery") will be operated as a Local Authority Lottery under the Gambling Act 2005 as amended ("the Act") 1.2 The Lottery is promoted by North Kesteven District Council and conducted for the benefit of the good causes listed from time to time as participating good causes. 1.3 The Lottery is administered by Gatherwell Ltd, Lytchett House, 13 Freeland Park, Wareham Road, Poole, Dorset, BH16 6FA, acting for North Kesteven District Council as the participating Society. 1.4 Gatherwell is certified as an External Lottery Manager ("ELM") by the Gambling Commission (Account No: 36893 )

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

INsight Information Hub We know that a diagnosis of GBS, CIDP or another associated inflammatory neuropathy can be an incredibly complex time, and it can be hard to understand what is happening to you or a loved one. This information hub can point you to resources at all levels, from easy to read blogs to more complex and robust fact sheets. The information has been prepared by our Medical Advisory Board, and can also be read in booklet form via our Downloads page. If it’s all a bit much and you need some advice or have any questions you can’t find here, please get in touch with the team. Contact Us It may also help to talk to someone who has lived experience of what you’re going through. Visit our Peer Support area to learn more. Peer Support GBS Info Hub Information on Guillain-Barré Read More CIDP Info Hub Information on CIDP Read More MMN Info Hub Information on MMN Read More Downloads Fact sheets, information booklets, posters, and flyers. Read More Podcasts Some of the best ways to share our stories are through live conversation. Read More Driving and Travel Need to know the next steps for independent travel? Visit here. Read More

Become a Trustee We currently have a full compliment of Trustees. When we have vacancies on the Board then we will update this page. Do you have a few days a year free to help Inflammatory Neuropathies UK – a knowledge of governance and maybe expertise in accounting, company secretary, HR, charity law or other Board level skills – then being a Trustee could be a great role for you. Trustees are responsible for the Charity’s strategy and policies and, ultimately, for everything the Charity does on behalf of people affected by GBS, CIDP & associated inflammatory neuropathies. If you are interested in applying to be a trustee please contact the Chief Executive by email to rich@inflammatoryneuropathies.uk

AGM Material To access the pre-read material for the 2025 Annual General Meeting, please click the headers below. If you have any questions or issues with these documents, please reach out to hello@inflammatoryneuropathies.uk . We look forward to seeing you in person or online on October 4th. Constitution Changes Information Accounts 2025 Trustee Pen Pictures