IIH UK is proud to support and work with health care professionals around the country and are involved in research in many ways.

Important reading for anyone treating adults with IIH who are also living with obesity.

Weight management communications in idiopathic intracranial hypertension: challenges and recommendations from the patients’ perspective, Dr Sally Abbott et al.


Co-creation and Patient and Public Involvement (PPI)

IIH UK trustees, research representatives and members have worked with researchers on the co-creation of research that is designed to improve the lives of people with Idiopathic Intracranial Hypertension (IIH). We have supported research teams input at the idea generation stage, research management and steering group attendance and have been co-applicants on a number of successful research grants. Do not hesitate to contact us if you would like our involvement in this area. Email


IIH UK has over 400 members across the UK and abroad, our website and social media sites are visited by over 6,500 people with IIH, their carers, families and health care professionals. IIH UK can support you by advertising research aligned to our research priorities. We have also worked with researchers to carry out electronic surveys see IIH UK research. Do not hesitate to contact us if you would like our involvement in this area. Email

Research funds

IIH UK has previously provided grants to support research projects aligned to our research priorities. Our latest grants can be found  HERE. To be alerted when further information is available please contact See what research IIH UK is currently supporting Here.


IIH UK is delighted to work with researchers to disseminate research to our members and visitors to our webpages. This widens the research impact. Health care professionals are also invited to attend our patient conference where many health care professionals have presented to our members. We are also developing a research archive on our website with a lay language summary of peer reviewed published research and are keen to work with researchers to develop this. We also have a members’ newsletter in which we are delighted to showcase research. This is circulated to our membership 4 times a year. Please contact us at to find out how to showcase your research in our newsletter or web pages. To widen the impact and dissemination of research IIH UK have supported the development and circulation of hard copy of research materials such as the IIH Research priorities, IIH guidelines for management and have put these into an information pack to ensure that vital evidence based research information is sent to all health care professionals treating with people with IIH around the country. To order an information pack and/or large guidelines poster please email

Patient Leaflets.

IIH UK has a number of patient leaflets available for download here. We have more leaflets in the pipeline and once all are complete we plan to have them printed into booklet form , they will be available to order for your clinics.

Conferences and events

IIH UK is proud to run an annual patient conference. Researchers and health care professionals from around the country present at this event. To find out about presenting to our members please contact IIH UK supports events that are aligned to our aims such as the annual CSF day.

Contact Us

Interested in getting involved with IIH UK?
Questions? Comments on our website, or want to know more about what we're planning? 
Also if you are a medical professional and would like to receive printed IIH UK Patient Leaflets, please email: