"The IH Registry is run in partnership with Oregon Health & Science University in Portland, Oregon. It is the first and only patient registry of its kind for chronic intracranial hypertension in the world. It represents the largest collection of medical data on chronic IH patients ever compiled and continues to grow. The Registry is international in scope, with patients enrolled from 26 countries; it also welcomes inquiries for collaborative research from researchers outside the US.

It is open to any patient with a confirmed diagnosis of idiopathic or secondary intracranial hypertension, regardless of nationality or country of residence and it is FREE. Any qualified physician researcher or basic researcher from any country in the world is invited to use and receive de-identified medical data once they have confirmed qualifications and receive IRB approval for the research project. The IHRF communicate with Physicians and Researchers globally." The IH Research Foundation

Partners of IIH sufferers are often overlooked, and often have to put aside their feelings when it comes to living daily, with an IIH sufferer. This forum is for the use of partners only and is not open to any of the other categories or user groups. 

Mums and Dads, who have a child with IIH, can talk about how it has affected you and your son/daughter, and share your experiences and any helpful advice. This forum is open only to parents and not any other category or user group.

Also working with us are the Partially Sighted Society.

They have a Low-Vision therapist who is on hand to offer help, advice and training in the choice and use of low-vision aids (which are available from the Partially Sighted Society) as well as orientation and mobility training where necessary.

Discuss the surgeries done for IIH or talk about your own. If you have a surgery or procedure coming up, why not add it to the calendar so members can be reminded on the day, and offer support.

Depression can strike anyone at any time, and with it comes extreme feelings of sadness, that just don't go away. It will affect every aspect of your life, the way you think, and the way you feel and it can last for weeks and even months.

It affects a person psychologically, physically and socially. In this section we will help you to recognise the symptoms of depression, and provide you with information. You can also discuss your own experiences as well as share with, and support other members.

Suggestions and advice on various subjects to do with IIH

Feel free to suggest methods that have helped you to cope with daily life with IIH, from housework to education. We all have found ways to adapt to everyday life, share these with other members.

Here you can find handy guides that we hope you will find useful in having a better life with your IIH, they are methods that we have used that have helped us to have as normal a life as possible.