Funding research, providing information & support for people with Idiopathic Intracranial Hypertension & all who support them. 1143522 & SCO43294
Joined June 2010
- Tweets 6,011
- Following 1,302
- Followers 2,503
- Likes 4,043
457 Photos and videos
A big SHOUT OUT to Nicola! She has taken on the challenge of walking 200,000 steps during Awareness Month to raise funds for us.
Thank you Nicola, you're a star!
justgiving.com/page/nicola-i…
If you are doing a fundraiser for us please let us know
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We have selection of information leaflets on our website that are viewable online also home printer friendly.
You can find them on the leaflets page of our website here:
iih.org.uk/leaflets
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In 2019 we undertook a survey asking 'What is the lived experience of headache in people with IIH.
This survey shows the breadth and depth of the impact of headache in IIH.
You can read about it here: iih.org.uk/product/90/5/2019…
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Research Trials are so important and we have a few videos to share with more information on how they work.
1. What is a trial?
#iihuk #iihukcharity #trials #researchtrials #whatisatrial #iihawareness #iihwarrior
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The wonderful @HOPE4TC at our conference earlier this month.
14 Jul 2025
🧠 This month we joined the @IIHUKOfficial National Conference to share how the Hope Programme is supporting people living with Idiopathic Intracranial Hypertension 💬
Next course 17/09!
🔗 bit.ly/3Tp9hmA
#HopeProgramme #IIH #ChronicIllnessSupport #PeerSupport
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IIH UK retweeted
14 Jul 2025
🧠 This month we joined the @IIHUKOfficial National Conference to share how the Hope Programme is supporting people living with Idiopathic Intracranial Hypertension 💬
Next course 17/09!
🔗 bit.ly/3Tp9hmA
#HopeProgramme #IIH #ChronicIllnessSupport #PeerSupport
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IIH UK retweeted
20 Jul 2025
TÜnde was diagnosed with Idiopathic intracranial hypertension #IIH around a year before starting the #HopeProgramme. She had just been trying to deal with all her symptoms and appointments. TÜnde heard about the course from support group @IIHUK Read more: h4c.org.uk/hopestories/2022/…
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IIH UK retweeted
21 Jul 2025
Tanya heard about the course from support group IIH UK National Charity where she found acommunity of people who were in the same situation. Read more: h4c.org.uk/hopestories/2023/…
#LiveWellWithHope
#FindYourHope
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IIH UK retweeted
14 Jul 2025
Naomi says that living with #IIH “was quite an eye-opener – it was a whole new world out there for me”. She was actively looking for more information, support and to learn from other people with IIH
Read more h4c.org.uk/hopestories/2022/…
#HopeProgramme
#LiveWellWithHope
#FindYourHope
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IIH UK retweeted
17 Jul 2025
Venous Sinus stenting is rapidly emerging as an alternative treatment to medically refractory IIH cases [pseudotumor cerebri] cases. Dedicated venous stents like River & Boss stent will be available soon & will be a game changer! Awaiting results of 4 RCTs! #IIH #Neurology #BIH
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IIH UK retweeted
17 Jul 2025
When a headache is more than a headache…
Check out my new Substack post! I talk about my journey with Idiopathic Intracranial Hypertension and my recent brain surgery.
#IIH #idiopathicintracranialhypertension
open.substack.com/pub/hlcart…
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IIH UK retweeted
18 Jul 2025
🌞 The June Hope newsletter is out now!
🧠 Help shape the future of HOPE
🗓️ New course dates
🐶 Tips from Harry
🎤 Highlights from IIH UK national conference
📩 Read more: bit.ly/3Iz57pG
#HopeProgramme #CommunitySupport #IIH #PeerSupport #HopeForTheCommunity
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Fundraising for us is easy!
Find out more here: iih.org.uk/section/6/1/how_y…
Already have an idea? Set up your Just Giving page here: justgiving.com/iihuk/donate
#iih #iihuk #justgiving #donate #fundraise
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Still a few places left, sign up now 💚💙
Our next course starting 17th September still has a few spaces left, book now.
h4c.org.uk/courses-all/iih-1…
#IIH #IIHUK #TheHopeProgram #Mindfulness #Wellbeing #Hope
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IIH UK retweeted
5 Mar 2025
TÜnde was diagnosed with Idiopathic intracranial hypertension #IIH around a year before starting the #HopeProgramme. She had just been trying to deal with all her symptoms and appointments. TÜnde heard about the course from support group @IIHUK Read more: h4c.org.uk/hopestories/2022/…
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IIH UK retweeted
3 Mar 2025
We're stronger together. 100 orgs backed by thousands of people working to ensure every person affected by a neurological condition can access the right care at the right time. Thank you for being a strong voice for change. Learn more bit.ly/3oBTlhy #BackThe1in6
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IIH UK retweeted
8 Dec 2024
Tanya heard about the course from support group IIH UK National Charity where she found acommunity of people who were in the same situation. Read more: h4c.org.uk/hopestories/2023/…
#LiveWellWithHope
#FindYourHope
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