We know that one of the biggest things for people impacted by #GBS, #CIDP, #MMN, and other #InflammatoryNeuropathies is speaking with someone who has been through what they are going through. These conditions are rare, and hearing from someone else who understands is vital. 1/3
Delighted to see @sharonhodgsonmp.bsky.social appointed to the Public Health and Prevention brief. We look forward to working with her around #RareDisease including #InflammatoryNeuropathies
Get applying now at www.charityjob.co.uk/jobs/inflamm...
#Charity #CharityJob #CharityJobs #GBS #CIDP #MMN #InflammatoryNeuropathies
After lunch, we've enjoyed hearing from Dr Johnson on her fascinating work on decoding #InflammatoryNeuropathies.
Then #MakingtheMostofNow's Clive Phillips and our Ambassador, Ben Watson spoke us through the #TourDeMMN cycle, and learning to accept limitations, and ask for help.
#BGT25
#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...
"CIDP causes... summer to be a minefield. I can't just enjoy a sunny day, I need to plan each move. Then at night? It feels like I'm trying to sleep on a bed of nails"
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.
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
This is one of the things that people who have had #GuillainBarreSyndrome talk about most. It’s also one of the things that we need to look into and research. While it unlikely to come back, the #fear of #GBS returning is all to real for many people in the #InflammatoryNeuropathies community.
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
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.
CIDP feels like... you have permanent pins-and-needles, 1000x more painful than you've ever experienced.
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
Rich is a real believer in the need for and the importance of emotional and mental health services for people impacted by #InflammatoryNeuropathies, so is very excited to hear what is happening and to work with others to look at ways that we can make things better for people
Today is #DINday, a day to celebrate the #InflammatoryNeuropathies Community, raise awareness about #GBS, #CIDP, #MMN and other conditions, and a day to support each other. To find out more about what you can do, head over to www.dinday.org
And they're off! #InflammatoryNeuropathiesUK's Chief Exec, Rich started the 40 mile Grim Reaper Ultra-Marathon at 8am. He's running to raise funds and awareness for #GBS, #CIDP, #MMN and other #InflammatoryNeuropathies.
FB live: fb.watch/zNioiBq2O7/
Support: justgiving.com/page/gain40for40
Concerned about upcoming changes to IVIg/SCIg procurement in England if you have CIDP? 💉 NHS England's new contracts from April 2025 mean some may switch Ig treatments.
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Learn more: inflammatoryneuropathies.uk
#CIDP #IVIg #SCIg #NHS #InflammatoryNeuropathies #PatientAdvocacy
A huge thanks to everyone who joined our #GetTogether in #Edinburgh!
Connecting with others who’ve experienced #GBS, #CIDP, #MMN & other #InflammatoryNeuropathies is both powerful for our community, and incredibly useful to steer our campaigns and work. Thank you ❤️
While we Get Together in Edinburgh on Sat, our fantastic Lancashire & Cumbria Group will be at Barton Grange Garden Centre, Preston for a special #GBSCIDPAwarenessMonth session from 10:30–14:30.
Affected by #GBS, #CIDP, #MMN, or other #InflammatoryNeuropathies? drop by!
"CIDP feels like... chronic fatigue that isn't about sleeping all the time - just a relentless bone weariness that's so draining it's hard to move."
We asked our community to describe #GBS, #CIDP, #MMN, and other #InflammatoryNeuropathies in their own words for #GBSCIDPAwarenessMonth.
How would you describe #ChronicInflammatoryDemyelinatingPolyradiculoneuropathy?
#InflammatoryNeuropathiesUK
It’s good to celebrate but even better to look forward & I was delighted to be reassured by the NHS Blood & Transplant team about potential ways forward. Some amazing and exciting plans being developed to ensure IVIg continues to be available and accessible to people with #InflammatoryNeuropathies.
Here we are at the end of the month (well close enough!). Last week we launched a new feature on our socials where we reflect on the week and celebrate any and all victories. As it's the months end, lets broaden it out. What did you in March that made you smile? #InflammatoryNeuropathies
Just spent an hour with a great group of people with #InflammatoryNeuropathies. To a person they all had experienced difficulties with diagnosis & treatment. Even lots of experience not being believed and being told how they felt. A few experiences even worse than that. Clearly issues in the system
My latest on the welfare changes and the concerns of people with #InflammatoryNeuropathies.
Last week the government announced a number of welfare & benefit cuts which created a lot of anxiety in the #InflammatoryNeuropathies Community. With the #SpringStatement announced in parliament today, Rich wanted to discuss what it may mean.
gaincharity.org.uk/gain-response-spring-statement
We also ran a #BirminghamGetTogether for people impacted by #InflammatoryNeuropathies. It was a most excellent session with people sharing honest experiences, inputting their thoughts and views, and supporting one another.
There's still time to pick up a free ticket to the #Birmingham Get Together of folk with #GBS, #CIDP, #MMN and associated #InflammatoryNeuropathies feat. special guests, Clive Phillips and Ben Watson!
www.ticketsource.co.uk/gain
Crowne Plaza NEC | Saturday 22nd March | 11:30-14:00
Great @gaincharity.bsky.social Board meeting tonight. Super frantic as usual, but loads of things agreed which will make a massive difference to the lives of people with #InflammatoryNeuropathies across the UK..
I wrote a thing about this very important change to how Ig products are purchased and distributed. It will impact a lot of folk with #CIDP #MMN and other #InflammatoryNeuropathies in England. Have a read and reach out if you are worried.
