Links & Resources
Resources and links to sources of further information and support for Idiopathic Intracranial Hypertension (IIH). These links are provided as a source of information on websites operated by other parties. We do not control such websites and we take no responsibility for their content. These links are provided for information and our inclusion of links to such websites does not imply any endorsement of views, statements or information contained in such websites.
- IIH Support Forum – the UK based IIH Support Forum – a place for patients and those close to them to share their experiences and get support. Easy to use, friendly and well laid out – still the best!
- IIH Weekender – the annual weekend for IIH sufferers jointly organised by IIH UK and the IIH Support forum.
- MSN Pseudotumor forum – American based site with some good information and a place to chat to others with IIH. Also has links to magnification software.
- European PTC Support Group: Online forum set up and run by the Dutch PTC Support Group. The messages are in English and the site is pretty easy to navigate and find your way around.
- Intracranial Hypertension Research Foundation – The IHRF is the only non–profit international organisation devoted to supporting reseacrh into intracranial hypertension and ultimately finding a cure. The IHRF runs a patient registry, provides support for IIH patients, their families, and medical professionals, and produces a quarterly newsletter.
- Association for Spina Bifida and Hydrocephalus (ASBAH) – ASBAH's main emphasis is on spina bifida and hydrocephalus, but they also have some information on IIH.
- Brain & Spine Foundation – The Brain and Spine Foundation was set up in 1992 to develop research, education and information programmes aimed at improving the prevention, treatment and care of people affected by disorders of the brain and spine
- Baylie for Brains – Baylie has both Chiari Malformation and IIH. The site has Baylie's journal, and information about the bracelets she sells to raise money for research.
- Melbourne Neurosurgery has a lot of information on neurosuregry, including shunt operation and lumbar punctures, and information on anatomy in an easy to read format
- Wikipedia has a very good explanation of IIH and it's symptoms and treatment
- Coventry Pain Clinic has a wealth of information on pain medication.
- Benefits and Work: a source of information on benefits and employment issues and lots more
- Benefits Now: self assessment tool for Disability Living Allowance and Attendance Allowance and disability equipment shop
Further links and sources of information and support can be found in our leaflet "Useful contacts, websites and references" which you can view and download on our leaflets page.
IIH UK gratefully acknowledges the support of