Inflammatory Neuropathies UK

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

I’m sure you will all give Tansy a very warm welcome and invite her into our amazing community with open arms.

Supporting people with rare health conditions is particularly close to her heart though, and she is very much looking forward to getting out and about and meeting you all properly soon, so that together we can continue to make a really positive impact for everyone in our community.

In her previous roles Tansy has been responsible for managing operations, leading staff, working with volunteers, and coordinating a wide range of services.

Yesterday we were thrilled to have Tansy Miller join us as our new Operations Manager.

Tansy brings over thirty years of experience in the community sector to Inflammatory Neuropathies UK having worked with Trussell, the MS Society, and Citizens Advice, to name but a few.

He also caught up with Clive and Ann as well as some of the others #TourDeMMN riders including Inflammatory Neuropathies UK very own Ben Watson. Also good to spend some time with Jean-Philippe Plançon, as well as Sandra Paci and other colleagues from argenx.

Rich was delighted to attend the preview of #NooneRidesAlone in Belgium last night. A massive thanks to Clive Phillips for the invite and to the whole Making The Most of Now team for sorting. We all need to thank the team at @argenx.com for their support as well.

Amplifying Patient Voices to Transform Rare Disease Care No One Rides Alone Feature Length Tour de MMN 2025 Documentary from Making the Most of Now and Silvereye Films Premieres 28 February 2026 Can someone with Multifocal Motor Neuropathy (MMN) ride the…

And you can catch it in the uk soon. All profits and donations are going into an MMN Research pot held by us here @inflamneurouk.bsky.social so get booked on and help fund vital research - makingthemostofnow.co.nz/no-one-rides...

Rich is off to Belgium today for a preview of #NooneRidesAlone a new film documenting Clive Phillips (an #MMN patient and his friends as they attempt to complete a #TourDeFrance route. It’s all about resilience and showing what you can do with a progressive life -changing condition.

Mark your diaries:

🩷Thursday 19th | GBS Online Get Together 2pm

🩷Friday 20th | MMN IN Conversation from 12pm

🩷Tues 24th | MMN Online Get Together from 7pm

🩷Thurs 26th | CIDP Online Get Together from 2pm

Zoom Get Togethers: www.inflammatoryneuropathies.uk/get-togethers

#GBS #CIDP #MMN

It's time for the next in our series of accessible #MMN blogs. This week, we take a look at diagnosis including timings, some of the more common conditions it may be misdiagnosed as, and then some of the tests you may expect to receive.

www.inflammatoryneuropathies.uk/post/how-is-...

#GBS Online Get Together | 2pm | Thurs

www.inflammatoryneuropathies.uk/get-togethers

#MMN IN Conversation | 12pm | Fri

Look for 'GBS/CIDP/MMN/Inflammatory Neuropathies UK Community' on Facebook

And a new #INallhonesty episode drops Thursday morning!

During #MMN Awareness Month, we reflect on what we can, should, and will be doing for our community. Our Chief Exec, Rich Collins, penned a few words - check it out:

www.inflammatoryneuropathies.uk/post/mmn-doi...

If you're impacted by MMN, let us know how we can represent you better?

Home Register to be a blood donor, give blood and save lives. Find out more about blood donation.

If you're looking to donate, please visit: blood.co.uk

You could save a life of someone needing an urgent blood donation, and you can improve the life of someone living with CIDP, MMN, or another Inflammatory Neuropathy.

#GiveBlood #DonateBlood

We're part of a fascinating session on blood donations from
NHS Blood and Transfusion today. We support people who receive plasma derived medications. Around half of a standard blood donation is plasma, so when you're giving blood, you're saving lives and supporting our community!

We're curious. Have you ever taken part in Movember for a charity? If so, did you keep the tash after November? Grow the full beard? Chris from our team took part in 2010 and hasn't seen his chin since!

A huge congratulations and thank you to Niall who absolutely smashed his fundraising goal in November by 200%! He took part in #Movember in honour of his dad who is living with the impact of #GBS.

Thank you, Niall!

#FundraisingHero

The impact of GBS can last a life time, that's why there's no limit to accessing our Peer Support service. Whether you're in rehab, recently released home, or it's been years and you're still living with the memories or residuals, we can organise a 1-to-1 call: hello@inflammatoryneuropathies.uk

"and I did survive, but the memories of that time will last for the rest of my life. #GBS was pure physical and mental trauma. I don't understand how more people don't know about it, how people don't worry every time they get a bug or fall ill that it might happen to them."

Are we ready to chat? Our online CIDP Get Together is at 2pm today on Zoom.

Join us:

www.inflammatoryneuropathies.uk/get-togethers

#CIDP

But ultimately, there's not a huge amount to worry about, and a few positive notes. So let us know! Do you agree with Rich's thoughts? Is there something we've missed or want us to expand on? Get in touch 📨

What do we cover this year? There's a few items that may catch your eye. Removal of the two child #benefit cap, expansion of the #HelptoSave scheme, #Motability Car Scheme changes, scrapping of the #ECO, and the increase of #MinimumLivingWage.

At Inflammatory Neuropathies UK, we pride ourselves in releasing a response to breaking news which may impact our community that day. Here's CEO Rich with his thoughts on the #2025budget.

www.inflammatoryneuropathies.uk/post/budget-...

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!

Using Lego to better understand Building Connections today with colleagues from across Europe and Africa today

Great meeting representing patient views around #CIDP in Berlin yesterday. Always working in collaboration

We have asked Rich to update on our socials so keep an eye on here to find out what he has been up to and what he has been finding out

Part of the trip is around the CIDP Principles of Care project which Rich is helping to steer, with the rest of the trip around representing a he interests and views of the UK community.

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.

Ever wondered where you can donate plasma? There aren’t many direct donation sites… but did you know 55% of your blood is plasma! When you give blood, you’re also helping create lifechanging treatments to give people with, for example, #CIDP their independence!

#IPAW