Articles for the ‘What’s New’ category
ISG members in the media
A couple of ISG members have been telling their story recently in the press, both in magazines and on tv. Please visit our MEDIA section to read or see their stories that have been featured in the media. For these and more stories about some of our members please visit our media area by clicking [...]
ISG is coming to the North West of England
The ISG is coming to the North West of England. The ISG Family Day is a brand new event for the charity and will take place on May 19th 2012 at a very exciting venue in the North West. The event will be an informative, educational and fun experience for adults and children. It’ll be [...]
Contact a Family Survey
Contact a Family is calling on parents and other family members caring for a disabled child to take part in their important research about the financial situation for families with disabled children in 2012. Counting the Costs 2012 is a repeat of a survey and report they carried out in 2008 and 2010. Your collective [...]
eBay for Charity
Are you clearing out the clutter? Making room for those Christmas presents or recycling the ones you don’t want? Why not sell your items on eBay? eBay for Charity is an easy way for buyers and sellers on eBay.co.uk to support the Ichthyosis Support Group. Buyers can shop for items knowing they’re supporting a good [...]
X Linked Study based in Birmingham – participants needed from the UK
The University of Birmingham and Birmingham Children’s Hospital have jointly set up a research study in boys and men, aged 6 to 30 years, with X-linked recessive ichthyosis (XLI). People with XLI lack steroid sulfatase, a substance with a role in the skin and also in the production of certain hormones. The research team want [...]
ISG’s online shop
The ISG has an online shop. You can easily browse and purchase merchandise directly through the website. NEW trolley coins, and of course many of your favourite ISG merchandise items such as Pin Badges, Pens, Keyrings etc are available. Visit our online shop today! To go directly to the shop please click here.
Support us with a text!
Help support our cause with a donation by text. It is very easy! Please support ISG by donating an affordable amount by simply texting your donation to 70070 and use unique code ICHT14 followed by a space then £10 to make a £10 donation. For more information before you text please click on the image. [...]
2011 Ichthyosis Support Group/British Skin Foundation Small Grant
The Ichthyosis Support Group (ISG) was delighted to team up with the British Skin Foundation (BSF) to award a joint grant of £10,000 for 2011 towards research into helping individuals living with ichthyosis. From the applications received the ISG’s Medical Advisory Board, and advvisors from the BSF decided the grant should be given to the [...]
Incorporation of the ISG
Those who attended the Annual General Meeting held during the Funday at Thorpe Park in September 2010 will recall we announced our plans for the next development of the ISG by becoming an incorporated charity. This would result in registration not only with the Charity Commissioners but also on the Companies Register. We had been [...]
ISG welcomes a new Trustee – Andy Corbett
My first proper introduction to the ISG was at the 2007 conference in Bloomsbury, London. My wife, Sue, said that her friend Maggie Aldwin was looking for volunteers to help over that weekend. It was to be a special weekend as the ISG was celebrating its 10th anniversary, so of course I said yes. I [...]
Where’s the point? – A trip around the UK!
The initial idea for the trip came when Sue (the wife), Aidan (the son) and I visited Lands End whilst on holiday. The commercialism of it seemed a shame, and though interested by the end to end exhibit, I thought not for me. Then I thought why not but go to the real southern point [...]
ITV’s This Morning interview with ISG member
ISG member Nusrit Shaheen appeared on ITV’s This Monring programme on Thursday 25th August along with ISG’s Medical Advisory Board Chairman Dr David Paige. You can see the interview by clicking on the title above and then following the link. Living with Harlequin ichthyosis (If you experience problems playing the clip, maybe a message saying [...]
Quality Standards for Dermatology
A document named Quality Standards for Dermatology has been published that has been worked on by a team of representatives from all the stakeholders in dermatology. These standards form the foundations of a good dermatology service for everyone with a skin condition. What will now be worked on are specific standards about different treatments and [...]
‘Top Tips’ – living with ichthyosis
Living with ichthyosis can be difficult for not only the person with the condition, but also family members or those closest to you. Some of our members, and their families, have come up with some great tips to make life easier and help with the day to day living with ichthyosis. If you have any words of [...]
Satisfaction in Life for Children – Quality of Life Measurement
Paediatric doctors at University College London have developed a quality of life measure for children aged 4 to 10 years old with a chronic illness such as ichthyosis. Many conditions, such as ichthyosis, have no specific information or statistics available regarding quality of life. It has been shown through much research, that given the same [...]
Research Study – request for participants
A team based at Cardiff University are seeking to recruit males aged 18-60 with very dry skin or ichthyosis, living in South Wales or South West England, to participate in a research study. Participants will be offered a small monetary contribution to cover travel expenses and inconvenience. If you are interested in participating, please contact [...]