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We are currently working towards being a registered charity in the UK, and are already a small constitured charity, but we hope to be able to establish in America, Canada and other countries around the world, where we hope to make a significant difference to the IH Community. We aim to do this by the following methods:

•Work with other organisations beneficial to the IIH community
•Raise funds for awareness and fund research for Organisations doing research into IIH and rare diseases
•Distribute multilingual Leaflets, Posters and Awareness Packs to all necessary avenues ie; Hospitals Neuro centres and Ophthalmology, Doctors Surgeries, Schools and Higher Education, Opticians, available to suffers on request.
•Get IIH recognised as a chronic illness and disease.
•Provide help resources for employment and benefits.
•Be able to have an International database of medical professionals specialising in IIH accessible to members needing medical help.
•Provide Computers to sufferers who are housebound to be able to connect to our support and other sufferers, depending on financial criteria.
•Give financial aid to sufferers when needed, depending on financial criteria.
•Provide finances for family holidays to those who are unable to afford a break, depending on financial criteria.
•Provide convalescence holidays to sufferers after surgery or complications.
•Set up regional volunteer service for sufferers who have no one to go with them to appointments, visit them in hospital, etc.
•Provide a practical support helpline team (possibly via Skype)
 
We already have a team made up of both UK and USA members, and we serve a membership of over 600 so far on our site. We have significant partnerships with other organisations who are all support and information based, and have an interest in IIH. These partnerships also are both UK and USA organisations.
 
Unfortunately IIH gets very little coverage, and awareness is no better now than it was over 20 years ago, when I was myself diagnosed. The lack of understanding and awareness impacts on a sufferer emotionally and mentally. We hope to change this by bringing IIH to the fore in the mainstream. We would welcome journalists interests to aid the awareness, and to show the full and comprehensive picture that a sufferer faces daily because of the symptoms,treatment and surgeries.