Inflammatory Neuropathies UK

It doesn't mean instant change & improvement, but does give us something to build on and use to hold services to account. We are delighted to see this standard in place, and are happy to endorse and support it. To find out more head to nice.org.uk/guidance/qs214 #NICE #RareDisease

It also states that everyone should have a named healthcare professional who coordinates or leads on their care and support. This is a great step forward in ensuring that people know what to expect in terms of care and support, and to what standard they should expect.

Just before Rare Disease Day, NICE (National Institute for Health and Care Excellence) launched a new Quality Standard for Rare Diseases. Quality Standards are designed to improve the quality of care and services delivered and commissioned by the NHS and other providers.

"I've injured myself quite badly in the gym more than once. Even using the machines/cables instead of free weights for 'safety'. My grip went, the cable fell, and the sudden change in weight resistance badly pulled my lower back.. it still hurts when I bend". #MMN

Follow Clive Phillips & a team of veterans as they take on the Alps, Mont Ventoux, and the Pyrenees in an extraordinary true story of resilience, teamwork, and hope. No One Rides Alone comes to UK cinemas in March + team Q&A. #MMN events.humanitix.com/host/making-th…

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: 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. inflammatoryneuropathies.uk/post/how-is-mm…

#GBS Online Get Together | 2pm | Thurs 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!

inflammatoryneuropathies.uk/post/megans-st… #MMN #MMNAwarenessMonth

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: inflammatoryneuropathies.uk/post/mmn-doing…

You can help increase Inflammatory Neuropathies UK’s entries into @easyuk’s giveaway to win a £500 donation – every new supporter who joins is an entry! Sign up before midnight 9th February, it’ll only take two minutes: join.easyfundraising.org.uk/inflammatoryne…

Please be aware we're having phone/internet issues. If you can't get hold of us this morning, please leave a message. We expect to be back this afternoon. Any changes to the timing, we'll post another tweet (Tweet? Are they still called tweets? Posts? Regardless, we'll update!)

We all know how important it is to give blood, but did you know that as part of that process you're also donating #plasma? Your plasma can be turned into strength restoring, independence giving, life altering #IVIg During #MMN Awareness month, will you pledge to donate?

As part of #MMN Awareness Month, we're launching a short blog series to help explore the condition in small, easy-read bursts. So to kick us off, what is MMN anyway? inflammatoryneuropathies.uk/post/what-is-m… #MMNAwareness

February is #MultifocalMotorNeuropathy (MMN) awareness month. #MMN is one of the “big three” conditions we support (among 40!). It affects just 0.6 people per 100,000, making it even rarer than GBS and CIDP, and is exactly why it needs its own spotlight. #MMNAwareness

#GreatNorthRun: The Ballot is Open! We have 5 entries this 13th Sep. We'll be keeping a ballot open until 11th Feb. Anyone interested in claiming a space, a shirt, and the title of Inflammatory Neuropathies UK Fundraising Hero, email hello@inflammatoryneuropathies.uk

Learn more about Jenny's journey youtu.be/BG0eA_cL2dg

Rosie's daughter, Jenny, was just five when she experienced the full impact of #GBS. Now she's in her thirties, and recently welcomed her own beautiful little girl to the world. #GuillainBarre can be, and is, devastating for a lot of people. But there can be light and hope.