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About us

We held our first AGM on 17th May 2008 and officially became a Voluntary Organisation.

August 2011 saw IIH UK become registered with the Charities Commission and the OSCR a year later.

Our enthusiastic Team of volunteers have enabled IIH UK to grow and we are busy providing information, promoting awareness and supporting sufferers and their families. With this in mind, we have created 14 UK regional support groups for members to meet up socially. The groups are growing weekly, some of them meet monthly and have enabled some firm friendships to develop.

We are distributing IIH patient information leaflets and posters into hospitals, GP surgeries, opticians, anywhere that will have them, to enable more IIH sufferers to access the information and support we provide. We continue to support people via our International Support Forum and hold our annual ‘Weekender’ giving people the opportunity to meet other people suffering with IIH whilst attending our annual Patient Conference and AGM.

Over the course of 2015 IIH UK will be working to ensure that we become part of a collective voice of organisations that represent genetic and neurological conditions. This will enable further awareness and campaigning for improvement for the lives of patients and families affected by IIH. In addition, this will assist in IIH being better understood by the general public and by all professionals with whom IIH patients come into contact. IIH UK are working closely with Dr Alexandra Sinclair the UK's IIH expert and her team of clinicians in Birmingham. We have been accepted to undertake a Priority Setting Partnership facilitated by the James Lind Alliance, where we will come together with clinicians and patients to prioritise and determine the Top Ten areas of IIH research that are deemed the most important and need further research.

Here at IIH UK we pride ourselves with the fact that we are totally run by volunteers, we have NO paid staff or buildings to maintain so every penny raised really does go towards promoting awareness of IIH, facilitating research, and helps us advocate the Charity's public, social and support activities.

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