Watch our James Lind Alliance IIH Priority setting partnership video to learn about why this collaboration with the James Lind Alliance is important.



Read all about the IIH PSP and how your responses to the PSP survey will help shape future IIH research. Please click here to find out more!




2017 IIH UK Patient Conference and AGM

This year's IIH UK Weekender and Patient Conference including our AGM is being held at the Golden Jubilee Conference Hotel, Beardmore Street, Clydebank, G81 4SA. It is a great time to get together and meet up with other IIH patients and their family, friends and carers. To find out more click here



Read all about the recent CSF Disorders Day at the Postgraduate Centre, University Hospitals Birmingham in October here!




2016 Patient Conference was a Great Success

We will let you know all about our Patient Conference and IIH Weekender which was held this year on Saturday 9th July 2016 in Harlow Essex very soon. If you missed some of the information about the speakers and talks on the day, check out the IIH UK twitter feed which was active throughout the day!

For now, we would like to thank everyone who was involved, including all our guest speakers, our Patron Dr Alexandra Sinclair, Ruchi Batra, Sarah Venugopal , Susan Mollan and James Mitchell. We would also like to say a big thank you to all the people with IIH and their family and friends who came along to the event too.


To read about past IIH UK conferences visit 2015 and 2014







 IIH Drug Trials Now Recruiting in Scotland!


This trial has now stopped recruiting. 
The Southern General Hospital, Glasgow will be recruiting IIH patients for the Drug Trial from March 7th. The investigators are Drs Alok Tyagi and Pushkar Shah. Read more about the IIH Drug Trial on our Research page here








Our patron Dr Alex Sinclair features in Lancet Neurology in the form of an interview were she spoke about headaches and how she felt headaches have an enormous impact on patients lives. 

Click here for the full article.




We would like to wish Sandra Doughty, former chair of IIH UK all the best in her future ventures as she moves overseas. We also send best wishes to Alan Doughty, former Trustee who will be by her side. Both Sandra and Alan have helped move the charity forward during there years and their time has been greatly appreciated.


In a letter to members Sandra wrote "I have really enjoyed my time with IIH UK and will miss working with a caring team. IIH UK is in a great position and well respected by the medical community. I know that the charity will continue its close relationship with the great team of clinicians in Birmingham and am I am extremely grateful to have had the opportunity to work alongside them. My very best wishes to you all and hope that an effective treatment and eventually a cure is found for IIH."


Due to work commitments, Victoria Davies will also be stepping down from her role as trustee and we thank her for her time but will not be saying goodbye as she will still play an active role in the North West group and supporting IIH UK when she can.


Shelly Williamson, who most of you will know is now acting chair of IIH UK until the AGM and two members from the IIH UK Team, Clare Parr and Keri Burrel have been invited to join the trustee board and have accepted. We welcome Keri and Clare and thank them for joining us.


If anyone is interested in joining the team please do contact us at This email address is being protected from spambots. You need JavaScript enabled to view it.




 Clinical Trials Recruiting Now!


This trail is no longer recruiting.- Are you a woman aged 18-55 with IIH & Papilloedema? A clinical trial is recruiting patients and paying up to £150 travel costs and a £300 thank you payment for taking part! Read more here  




 This trail is no longer recruiting. - Click on the advert below for more information! Also people with a BMI>35 without IIH needed for the trial as control patients. Contact the Trial Team for more information This email address is being protected from spambots. You need JavaScript enabled to view it.









Patient Conferences 

2015 2014