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Site Last Updated 04/07/2017

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Latest News

July 2017

We are working on ideas for our awareness campaign for IIH September Awareness month, check back for more information coming very soon.

February 2017

On the 28th we are pleased to be part of raising awareness of IIH as part of Rare Disease Day 2017.

December 2016

We have created a brand new support group for sufferers of IIH / IH on Facebook, please come and join us Here.

June 2016

We have opened a brand new group on Facebook for Partners, Relatives and Carers of IIH sufferers. If you would like to join please Click Here.

May 2016

We have opened a brand new group on Facebook for members to swap and share healthy food recipes. It doesn't matter if you follow or want to follow a certain diet plan these recipes can be adapted to suit you.

Each uploaded recipe is intended to be as easy and cheap to produce but obviously some differ in skill level and cost.

To join in this group please Click Here


We have spent time researching and creating useful links pages this includes Denmark, New Zealand and Canada.
We have also updated our useful links pages for UK (including Scotland, Northern Ireland and Wales), Ireland, USA and Australia along with general links.

Brand New Page Added
To Our Website

We have added a brand new page to this website for sufferers to submit any artwork, poetry, blog link, drawing or Youtube video to us for display. This is a good way for people to raise awareness whilst using there creativity and inner feelings in a positive way.

So if you would like to submit something to us then please get in contact. You can find the page here.

September 2016 Awareness Month

September is our official awareness month, this year we constructed an awareness campaign and uploaded it to Youtube for people to view, the link is below.
This year we asked not only sufferers themselves to get involved but also there Partners and Families. We did this as we wanted to highlight that although we ourselves face the Physical symptoms our Partners and Families also suffer the Mental and Emotional side along with us.
The final video is very exciting and informing.

Click Here To View

(Don't forget to watch with sound)

September 2015 Awareness Month

This year we asked fellow sufferers if they would participate by donating an image of themselves on a good day and a bad day.

We had an overwhelming response and the final article is very exciting. The object of a good day and a bad day is we wanted to focus on the fact that IIH along with many other conditions and disabilities are not always visible, however just because you can’t see it, it doesn't mean its not real.
Click Here To View