Latest News

The IIH Pressure Trial is recruiting now, you can read more about it on our Research page HERE

We are pleased to announce the date of our 2018 Patient Conference and AGM - Saturday 7th July 2018.  Next year is our 10th birthday so come help us celebrate! 

Back in May 2017 our Trustees Shelly Williamson and Norma-Ann Dann recorded a series of Educational Video's. You can view them here

 September Awareness Month is upon us, check our our Facebook page to see what we've been up to. 

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 was held at the Golden Jubilee Conference Hotel, Beardmore Street, Clydebank, G81 4SA. Our conferences, fondly known as the 'Weekender', are a great opportunity for IIH patients to get together with their family, friends and carers. 



You can read the conference reports here: 2017 / 2016 / 2015 

Are you a clinician or trainee with an interest in IIH?  The 2017 CSF disorders day takes place on 27th September, aimed at consultants in neurosurgery, neurology, ophthalmology, neuro-radiology and those with a special interest in CSF disorders and headaches inc Trainees. To find out more and to book tickets please click here

Read all about the previous CSF disorder days here:
2016 / 2015 


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!



The Drug trail is no longer recruiting IIH Patients - However people with a BMI>35 without IIH are still 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.