Previously GAIN - We're the only charity dedicated to supporting people impacted by GBS, CIDP, MMN, and other Inflammatory Neuropathies in the UK and Ireland
UK
Joined February 2011
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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.
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.
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
"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
ALT "MMN isn't painless. The condition itself shouldn't hurt. But hot drinks spilled when your grip goes, items dropped squarely on your toes, achy muscles compensating for the ones that won't work, treatment headaches. That all hurts"
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/ma…
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/…
#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/…
#GBS Online Get Together | 2pm | Thurs
inflammatoryneuropathies.uk/…
#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: inflammatoryneuropathies.uk/…
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/…
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!)
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/…
#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 [email protected]
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.
