The I Have IIH Foundation

We're always here when you need us!

Working to give people affected Idiopathic Intracranial Hypertension a voice and a better life

The I Have IIH Foundation is a registered UK based charity, who provide people living with IIH with information, counselling, 24/7 support, advice and resources. We advocate and support giving a voice to those affected by this rare disease. We are part of the Rare Foundation Alliance. No matter where you live in the world, we're here for you.

Our Aim - To empower sufferers of IIH with a better knowledge and understanding of their condition, so they can adapt to life with IIH and have a more productive life. To provide information, support material, forums, advocacy and general support to assist them. To help IIH sufferers come to terms with their diagnosis and treatment in a positive way. To provide financial assistance, support and practical advice. To advance the awareness of the general public in all areas relating to Idiopathic Intracranial Hypertension.


Social inclusion for sufferers of IIH. No one should suffer in silence or feel isolated.

Building self-confidence

We Know:

the impact IIH has on families

the suffering and pain caused by the symptoms and treatments

the life-changing affects that IIH brings to mind, body and spirit

what it’s really like to live with IIH

the impact on social and working life

the financial toll it takes because of time off work or loss of work

Comment Stream