IIH Support UK


IIH UK has an extremely supportive online group with over 5000 members. Here people share their experiences, offer tips and there is an extensive file section with useful information such as holiday insurance or what to pack for a hospital visit. This group is a life line for many who have never met anyone with the condition!

IIH Support UK Group

IIH Employment and Study Support Group For anyone needing support with work and studying issues with IIH.

IIH Support for men This group is just for men with IIH. A safe place to discuss men's IIH issues.

IIH UK Weight loss Support Group The aim of this group is to provide support for anyone with IIH trying to loose weight. A place to share recipes, tips and ideas for healthy eating.

Northwest Meet Up


IIH UK also have several regional groups throughout the UK where people will talk about local services and meet up for a chat and a bite to eat while offering each other and there families support.

Why not join the Facebook support community! Just click on the links below to join a group. 





Map of the UK East Anglia West Anglia East Midlands West Midlands North West South East North East Yorkshire South West Yorkshire North Wales South Wales South West Norther Ireland Scotland North East



Why not arrange a meet up in your regional group and we will advertise it here


Upcoming Meet Ups:


The Northwest and North East have had several good meets ups this year and are always looking for new people to join them.


Small get togethers are organised by members of our regional groups, join one today and meet others with IIH! 


IIH UK is members of the following organisations.

  Genetic Alliance Logo    Neurological Alliance Logo     JLA Logo    Alliance    ;NCVO Logo    RDD Logo