Inflammatory Neuropathies UK
@inflamneurouk.bsky.social
The only charity dedicated to supporting people impacted by Guillain-Barré Syndrome, CIDP, MMN, and other Inflammatory Neuropathies in the UK and Ireland
It's that time again - it's the day of our online #GBS Get Together! We'll run from 2pm and anyone living with the impact of GBS is welcome to join, chat, and swap stories.
Here's your link: www.inflammatoryneuropathies.uk/get-togethers
See you at 2pm!
Here's your link: www.inflammatoryneuropathies.uk/get-togethers
See you at 2pm!
October 16, 2025 at 9:29 AM
It's that time again - it's the day of our online #GBS Get Together! We'll run from 2pm and anyone living with the impact of GBS is welcome to join, chat, and swap stories.
Here's your link: www.inflammatoryneuropathies.uk/get-togethers
See you at 2pm!
Here's your link: www.inflammatoryneuropathies.uk/get-togethers
See you at 2pm!
Using Lego to better understand Building Connections today with colleagues from across Europe and Africa today
October 10, 2025 at 8:57 AM
Using Lego to better understand Building Connections today with colleagues from across Europe and Africa today
Rich is off on his travels again. This time he is going to Berlin for a series of meetings with colleagues from across Europe.Africa, and the US. He will be joined by @inflamneurouk volunteers and members from the UK and Ireland.
October 8, 2025 at 12:23 PM
Rich is off on his travels again. This time he is going to Berlin for a series of meetings with colleagues from across Europe.Africa, and the US. He will be joined by @inflamneurouk volunteers and members from the UK and Ireland.
Due to unforeseen circumstances, the Inflammatory Neuropathies UK office will be shut until Tuesday 30th September. You can still call and leave a message on 01529 469910 or email [email protected], but we won't be able to respond until Tuesday.
September 24, 2025 at 5:08 PM
Due to unforeseen circumstances, the Inflammatory Neuropathies UK office will be shut until Tuesday 30th September. You can still call and leave a message on 01529 469910 or email [email protected], but we won't be able to respond until Tuesday.
Even while surrounded by love and support, #GBS can be isolating when people can't understand the way your body, or mind, feels.
You can join a group of people who do get it though. Our Online #GuillainBarre Get Together meets in an hour at 2pm
www.inflammatoryneuropathies.uk/get-togethers
You can join a group of people who do get it though. Our Online #GuillainBarre Get Together meets in an hour at 2pm
www.inflammatoryneuropathies.uk/get-togethers
August 21, 2025 at 11:44 AM
Even while surrounded by love and support, #GBS can be isolating when people can't understand the way your body, or mind, feels.
You can join a group of people who do get it though. Our Online #GuillainBarre Get Together meets in an hour at 2pm
www.inflammatoryneuropathies.uk/get-togethers
You can join a group of people who do get it though. Our Online #GuillainBarre Get Together meets in an hour at 2pm
www.inflammatoryneuropathies.uk/get-togethers
#NHSEngland has published its new Adult #Neurology Services specification. Our CEO contributed feedback on behalf of the #InflammatoryNeuropathies community earlier this year, here's his view on the spec:
www.inflammatoryneuropathies.uk/post/new-spe...
www.inflammatoryneuropathies.uk/post/new-spe...
August 14, 2025 at 5:18 PM
#NHSEngland has published its new Adult #Neurology Services specification. Our CEO contributed feedback on behalf of the #InflammatoryNeuropathies community earlier this year, here's his view on the spec:
www.inflammatoryneuropathies.uk/post/new-spe...
www.inflammatoryneuropathies.uk/post/new-spe...
During a #heatwave, some #InflammatoryNeuropathies like #CIDP can feel more pronounced due to the temp.
Pins & needles can feel more prominent, especially at night after a day outside. Take precautions when out - drink more water, seek shade, and sit down/rest frequently.
Pins & needles can feel more prominent, especially at night after a day outside. Take precautions when out - drink more water, seek shade, and sit down/rest frequently.
August 14, 2025 at 10:02 AM
During a #heatwave, some #InflammatoryNeuropathies like #CIDP can feel more pronounced due to the temp.
Pins & needles can feel more prominent, especially at night after a day outside. Take precautions when out - drink more water, seek shade, and sit down/rest frequently.
Pins & needles can feel more prominent, especially at night after a day outside. Take precautions when out - drink more water, seek shade, and sit down/rest frequently.
We're breaking down results to a recent survey. You told us emotional #wellbeing for those with #GBS, #CIDP, #MMN & other #InflammatoryNeuropathies is a vital focus point. Please see Facebook, Insta or LinkedIn for the longer form post!
#MentalHealth #InflammatoryNeuropathiesUK
#MentalHealth #InflammatoryNeuropathiesUK
August 12, 2025 at 5:03 PM
We're breaking down results to a recent survey. You told us emotional #wellbeing for those with #GBS, #CIDP, #MMN & other #InflammatoryNeuropathies is a vital focus point. Please see Facebook, Insta or LinkedIn for the longer form post!
#MentalHealth #InflammatoryNeuropathiesUK
#MentalHealth #InflammatoryNeuropathiesUK
With so much physical damage from #GuillainBarreSyndrome, it can be easy to overlook the emotional impact of #GBS. It helps to talk:
Get Together inflammatoryneuropathies.uk/get-togethers
Emotional Support inflammatoryneuropathies.uk/health
Peer Support inflammatoryneuropathies.uk/peer-support
Get Together inflammatoryneuropathies.uk/get-togethers
Emotional Support inflammatoryneuropathies.uk/health
Peer Support inflammatoryneuropathies.uk/peer-support
August 7, 2025 at 8:50 AM
With so much physical damage from #GuillainBarreSyndrome, it can be easy to overlook the emotional impact of #GBS. It helps to talk:
Get Together inflammatoryneuropathies.uk/get-togethers
Emotional Support inflammatoryneuropathies.uk/health
Peer Support inflammatoryneuropathies.uk/peer-support
Get Together inflammatoryneuropathies.uk/get-togethers
Emotional Support inflammatoryneuropathies.uk/health
Peer Support inflammatoryneuropathies.uk/peer-support
Some #behindthescenes shots from our filming session in Kendal. A huge thanks to Zoe for sharing her #GuillainBarre story and the #KendalWasps for allowing us into their #rugbyclub to film.
We can't wait to reveal these impactful stories of #GBS to the world soon.
#bts
We can't wait to reveal these impactful stories of #GBS to the world soon.
#bts
August 5, 2025 at 12:03 PM
Some #behindthescenes shots from our filming session in Kendal. A huge thanks to Zoe for sharing her #GuillainBarre story and the #KendalWasps for allowing us into their #rugbyclub to film.
We can't wait to reveal these impactful stories of #GBS to the world soon.
#bts
We can't wait to reveal these impactful stories of #GBS to the world soon.
#bts
Did you know 500,000 litres of #plasma from blood & direct plasma donations could help approx. 2,463 people with #CIDP? An amazing result, but because so many other conditions, including #InflammatoryNeuropathies like #GBS require #immunoglobulin, the #NHS always need more.
Learn: www.blood.co.uk
Learn: www.blood.co.uk
August 2, 2025 at 10:41 AM
Did you know 500,000 litres of #plasma from blood & direct plasma donations could help approx. 2,463 people with #CIDP? An amazing result, but because so many other conditions, including #InflammatoryNeuropathies like #GBS require #immunoglobulin, the #NHS always need more.
Learn: www.blood.co.uk
Learn: www.blood.co.uk
A huge thank you to Nicole for sharing her emotional #GuillainBarreSyndrome story.
#GBS struck at the height of the pandemic - Christmas 2020. Here's her story:
inflammatoryneuropathies.uk/post/nicoles-story-gbs
#InflammatoryNeuropathiesUK #RareCondition #covid #NHS
#GBS struck at the height of the pandemic - Christmas 2020. Here's her story:
inflammatoryneuropathies.uk/post/nicoles-story-gbs
#InflammatoryNeuropathiesUK #RareCondition #covid #NHS
August 1, 2025 at 11:27 AM
A huge thank you to Nicole for sharing her emotional #GuillainBarreSyndrome story.
#GBS struck at the height of the pandemic - Christmas 2020. Here's her story:
inflammatoryneuropathies.uk/post/nicoles-story-gbs
#InflammatoryNeuropathiesUK #RareCondition #covid #NHS
#GBS struck at the height of the pandemic - Christmas 2020. Here's her story:
inflammatoryneuropathies.uk/post/nicoles-story-gbs
#InflammatoryNeuropathiesUK #RareCondition #covid #NHS
Well done to Pete MacKenzie who took over BBC Radio nan Gàidheal during drive time to share three songs that mean a lot to him, and share a little of his #GBS journey via host, Derek Pluto.
Pete's segment is from 36 mins: www.bbc.co.uk/sounds/play/...
#GuillainBarreSyndrome
Pete's segment is from 36 mins: www.bbc.co.uk/sounds/play/...
#GuillainBarreSyndrome
July 31, 2025 at 5:05 PM
Well done to Pete MacKenzie who took over BBC Radio nan Gàidheal during drive time to share three songs that mean a lot to him, and share a little of his #GBS journey via host, Derek Pluto.
Pete's segment is from 36 mins: www.bbc.co.uk/sounds/play/...
#GuillainBarreSyndrome
Pete's segment is from 36 mins: www.bbc.co.uk/sounds/play/...
#GuillainBarreSyndrome
A very happy birthday to Christine Beattie, celebrating her 70th today. Usually the person of honour receives the gifts, but Christine has kindly organised a fundraiser on her special day after experiencing #GBS in 2014.
www.justgiving.com/page/christine-beattie-2
Thank you, Christine! 🎂🎈
www.justgiving.com/page/christine-beattie-2
Thank you, Christine! 🎂🎈
July 31, 2025 at 9:35 AM
A very happy birthday to Christine Beattie, celebrating her 70th today. Usually the person of honour receives the gifts, but Christine has kindly organised a fundraiser on her special day after experiencing #GBS in 2014.
www.justgiving.com/page/christine-beattie-2
Thank you, Christine! 🎂🎈
www.justgiving.com/page/christine-beattie-2
Thank you, Christine! 🎂🎈
These aren't easy to stories to read and we know they're even harder to share and relive. However, these posts do get attention and the more people learn, the better care, treatment, support will become in the UK, so thank you 🩷
#GuillainBarreSyndrome #GBS #RareConditions
#GuillainBarreSyndrome #GBS #RareConditions
July 30, 2025 at 5:04 PM
These aren't easy to stories to read and we know they're even harder to share and relive. However, these posts do get attention and the more people learn, the better care, treatment, support will become in the UK, so thank you 🩷
#GuillainBarreSyndrome #GBS #RareConditions
#GuillainBarreSyndrome #GBS #RareConditions
Good luck to #HollingworthLakeRowingClub who are taking on 24h of #rowing to raise funds for #InflammatoryNeuropathiesUK!
They're supporting member Jason Hardman who has been diagnosed with #guillainbarresyndrome, you can support them at justgiving.com/page/hlrc-24hr-row
#GBS
They're supporting member Jason Hardman who has been diagnosed with #guillainbarresyndrome, you can support them at justgiving.com/page/hlrc-24hr-row
#GBS
July 30, 2025 at 9:35 AM
Good luck to #HollingworthLakeRowingClub who are taking on 24h of #rowing to raise funds for #InflammatoryNeuropathiesUK!
They're supporting member Jason Hardman who has been diagnosed with #guillainbarresyndrome, you can support them at justgiving.com/page/hlrc-24hr-row
#GBS
They're supporting member Jason Hardman who has been diagnosed with #guillainbarresyndrome, you can support them at justgiving.com/page/hlrc-24hr-row
#GBS
Are you part of the #InflammatoryNeuropathiesUK group on Facebook? You can join 4,000+ people with experience of #GBS, #CIDP, #MMN, #Vasculiticneuropathy, #MADSAM, #SIDP, & more.
facebook.com/groups/727400487277814 or search GBS/CIDP/MMN/Inflammatory Neuropathies UK Community on Facebook.
facebook.com/groups/727400487277814 or search GBS/CIDP/MMN/Inflammatory Neuropathies UK Community on Facebook.
July 29, 2025 at 4:42 PM
Are you part of the #InflammatoryNeuropathiesUK group on Facebook? You can join 4,000+ people with experience of #GBS, #CIDP, #MMN, #Vasculiticneuropathy, #MADSAM, #SIDP, & more.
facebook.com/groups/727400487277814 or search GBS/CIDP/MMN/Inflammatory Neuropathies UK Community on Facebook.
facebook.com/groups/727400487277814 or search GBS/CIDP/MMN/Inflammatory Neuropathies UK Community on Facebook.
It helps to talk. If you've experienced #GBS you may feel alone, even while surrounded by loved ones. We can link you with someone who has lived it for a conversation, a vent, or just a friendly ear.
inflammatoryneuropathies.uk/peer-support
inflammatoryneuropathies.uk/peer-support
July 28, 2025 at 4:36 PM
It helps to talk. If you've experienced #GBS you may feel alone, even while surrounded by loved ones. We can link you with someone who has lived it for a conversation, a vent, or just a friendly ear.
inflammatoryneuropathies.uk/peer-support
inflammatoryneuropathies.uk/peer-support
We've had an incredible July. One major highlight was kicking off a filming project that has been over a decade in the making. These stories of #GuillainBarreSyndrome are coming from the North West of England and we can't wait for you to hear them soon.
#documentary
#documentary
July 28, 2025 at 3:29 PM
We've had an incredible July. One major highlight was kicking off a filming project that has been over a decade in the making. These stories of #GuillainBarreSyndrome are coming from the North West of England and we can't wait for you to hear them soon.
#documentary
#documentary
Wednesday was spent with colleagues from EPODIN and Takeda. Really good discussions hearing from other patient advocacy groups from across Europe, the latest on the vast Europe wide patient led survey project around #CIDP, and issues being faced by people impacted by #InflammatoryNeuropathies.
July 4, 2025 at 8:11 AM
Wednesday was spent with colleagues from EPODIN and Takeda. Really good discussions hearing from other patient advocacy groups from across Europe, the latest on the vast Europe wide patient led survey project around #CIDP, and issues being faced by people impacted by #InflammatoryNeuropathies.
Thank you to our fantastic community for sharing these personal insights, they're expanding our reach beyond our followers, helping to inform the wider public about #InflammatoryNeuropathies.
New here because of one of these stories? Welcome! Please stick around & learn with us.
#CIDP
New here because of one of these stories? Welcome! Please stick around & learn with us.
#CIDP
June 26, 2025 at 4:24 PM
Thank you to our fantastic community for sharing these personal insights, they're expanding our reach beyond our followers, helping to inform the wider public about #InflammatoryNeuropathies.
New here because of one of these stories? Welcome! Please stick around & learn with us.
#CIDP
New here because of one of these stories? Welcome! Please stick around & learn with us.
#CIDP
Busy afternoon! First up is our #CIDP Get Together from 2pm on Zoom: www.inflammatoryneuropathies.uk/get-togethers
Then a cuppa before #argenx's #DaretoCare session at 3:30pm on coping with fatigue, emotions, mobility, & finding balance in everyday life: preferences.argenx.com/dare-to-care...
Then a cuppa before #argenx's #DaretoCare session at 3:30pm on coping with fatigue, emotions, mobility, & finding balance in everyday life: preferences.argenx.com/dare-to-care...
June 26, 2025 at 12:10 PM
Busy afternoon! First up is our #CIDP Get Together from 2pm on Zoom: www.inflammatoryneuropathies.uk/get-togethers
Then a cuppa before #argenx's #DaretoCare session at 3:30pm on coping with fatigue, emotions, mobility, & finding balance in everyday life: preferences.argenx.com/dare-to-care...
Then a cuppa before #argenx's #DaretoCare session at 3:30pm on coping with fatigue, emotions, mobility, & finding balance in everyday life: preferences.argenx.com/dare-to-care...
Thanks to a fantastic uptake by our community, we have enough #MyNeuroSurvey responses to do a deeper delve on what the results means for those with an #InflammatoryNeuropathy. Stay tuned for that analysis soon.
Will you add your name to #TheNeurologicalAlliance's letter?
bit.ly/ActForThe1in6
Will you add your name to #TheNeurologicalAlliance's letter?
bit.ly/ActForThe1in6
June 25, 2025 at 5:01 PM
Thanks to a fantastic uptake by our community, we have enough #MyNeuroSurvey responses to do a deeper delve on what the results means for those with an #InflammatoryNeuropathy. Stay tuned for that analysis soon.
Will you add your name to #TheNeurologicalAlliance's letter?
bit.ly/ActForThe1in6
Will you add your name to #TheNeurologicalAlliance's letter?
bit.ly/ActForThe1in6