IIH Weekender 2008

IIH UK

About IIH UK

IIH UK has been four years in the planning. IIH has taken it's toll, and as most of the members of the IIH UK committee have been diagnosed with IIH, there have been times when progress has been slow when team members have been unwell. Towards the end of 2007 though the planning of IIH UK started again in earnest, and we now have a strong team of IIH UK Officers who are committed to the IIH cause, and have systems built into our structures to ensure the smooth running of IIH UK if individual team members are unwell.

IIH UK was formed by a group of IIH sufferers and supporters who "met" on the internet through the original "BIH Forum" which ran for eight years on it's founder Michelle's website. At that time it was one of the few places that the geographically scattered and relatively small numbers of people diagnosed with IIH could get support from those who understand living with this condition on a daily basis - the sufferers themselves. More recently the day to day running of the forum has been taken over by Rachel, and the forum has moved to it's own domain, iihsupport.org. Over the past couple of years the forum has expanded, and there are further plans for expansion of the forum.

Aside from IIH, the one thing all of the IIH UK Team had in common was that we realised that when we were first diagnosed, and desperate for information on this strange rare condition we'd been told we'd got, we could find little information on it. There was no one place where we could find information in a readily accessible format, and for most of us it was pure luck that we stumbled upon the "BIH Forum".

Although there are other organisations who provide some information on IIH, there was no national organisation dedicated to the needs of sufferers of IIH in the UK, and no "natural" place to think of to look for information....so we set about and we set one up!

We are all either diagnosed as having IIH, or are close to someone who lives with IIH. Most of the team are not medically trained, but we have all lived with IIH for some time and have a lot of experience in dealing with the issues that surround IIH. Each member of the team brings their unique skills and talents, and we have put together a management team that includes members experienced in working in the voluntary sector, with research skills, administrative and secretarial skills, financial and fundraising skills, publicity and newsletter production, strategic planning...working as a team we have the combined skills to be able to effectively run IIH UK, and to raise awareness of the condition, providing a voice for IIH sufferers, and working with the other organisations, both in the UK and internationally to push the IIH agenda forward, and perhaps most importantly, to work with the medical profession towards improving treatment for those with IIH.

You can read more about our aims and our plans for IIH UK on our website.

The IIH Weekender 2008 is both the first national meeting of members of the IIH Support forums, and will be the official launch of IIH UK, and also the venue for our first General Meeting. We plan to make the IIH Weekender an annual event, and the annual Weekender will also host IIH UK's AGM (Annual General Meeting).

Whether you're already a member of the IIH Support forums, or you're perhaps just stumbled upon our website and you're affected by IIH, we'd be delighted to welcome you to our IIH Weekender. Please explore the website for further details of what we're planning, and if you're interested in being kept informed of our future plans, please sign up on our mailing list to receive our newsletter on future plans for next year's Weekender and changes to our site.

Last Modified: 12/05/08

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