Friends of Ichthyosis

Friends of Ichthyosis is a charity/community group I have set up with some good friends. And all proceeds from sales of my craft items will be going to this cause.

I decided to set up 'Friends of Ichthyosis' as I could find very few places on the internet for sufferers of the condition Ichthyosis. Having Ichthyosis myself (as does my 16 month old daughter Rebecca), I know only too well what it is like to feel isolated, therefore I wanted to set up a website where sufferers, families of sufferers and those affected by Ichthyosis in one way or another could come together to share thier experiences and just generally have somewhere they could visit online where they know they're not alone in having this rare, debilitating condition.

  Our ultimate goal is to provide support, advice and to raise awareness of the condition among the wider public as well as among medical professional in order to get our voices heard in the hope that further research can be done into further treatments for the condition. However, further research can only be done with funding. As an individual, also with help of friends, family, the public and visitors to the website, we hope to organise fundraising events, more regular meetings, fun days out and other activities.
 and with your help and support I know we can achieve great things.

As it stands at present, this is a fairly new group but with progression and support from people like your good selves, we can join together, not only to help and support each other, but to also help and support fellow sufferers out there who may up until now, have suffered in silence. Any fundraising events that take place will have all proceeds donated directly to Friends of Ichthyosis.
So please, if you would like to get involved in any way please get in touch, we'd love to hear from you. We have big plans for fundraising events, so be sure to check the website for news and updates as soon as we have it at

Thank you

No comments:

Post a Comment