Latest news

Meet our Celebrity Supporters


 

 

 


 Lee Westwood tournament bag auctioned for the ISG

FULL STORY

Ex-Liverpool striker Robbie Fowler held a charity golf day on the 18th May 2009 to raise funds for the ISG.

FULL STORY

In September 2008 we held a Funday at Alton Towers read about it here.

FULL STORY

Walk for Skin 2008 in Regents Park, read about it here.

FULL STORY

In March 2007 we celebrated our 10th Anniversary and 5th National Day!

FULL STORY

Fun Day in Bristol in 2006.

FULL STORY

Phoenix Nights Fundraiser Saturday 28th January 2006.

FULL STORY

 

Thank you for visiting the

Ichthyosis Support Group (ISG)

The ISG was formed in 1997 by people impacted (in some way) by ichthyosis to create a network of parents, sufferers and medics to help individuals and families affected by the condition

 


  Study launched in Birmingham:
Hormones in X-linked Ichthyosis
- participants wanted!


 

 Online Survey Requests 

The ISG has been asked to assist a couple of organisations with surveys, please take the time to review these and complete them if you feel they could apply to you.

Want a £5 Play.com voucher?

Up for it? Well all you have to do is complete this online Romantic Relationships Survey, which is being conducted by the Centre for Appearance Research at the University of the West of England.

A visible difference is the visible effect of a skin condition, scar, burn, cleft lip/palate or other disfigurement.

We want to know about the experiences that young people aged 13-18 with a visible difference have of developing romantic relationships (e.g. meeting with, spending time with, seeing, dating, or going out with someone), any concerns they may have, what they think of current support and what support they think would be good in the future.

It’ll only take you 15 minutes, it’s anonymous and what you say will help develop YP Face It, an online support programme for young people with visible differences. So your opinion is really important to us.

So to have your say and bag yourself a £5 Play.com voucher, click on the link below:

Romantic Relationship Survey

Rare Disease UK's Survey of Patients' and Families' Experiences of Rare Disease

Please help us to build a picture of rare diseases in the UK from the perspective of patients, families and carers
Rare Disease UK is conducting a survey of patients’ and families’ experiences of access to care, treatment and support in the UK. This survey will be crucial in facilitating our campaigning and awareness raising work. The results of the survey will:

Help gain an understanding of some of the issues that matter to patients and families
Be put to politicians and policy makers to highlight areas of concern/good practice
Be published in a new RDUK booklet of patients' and families' experiences – this will be launched at a reception at the House of Commons in the autumn
Help inform our working groups and our report into a strategy for rare diseases (which will be launched on Rare Disease Day 2011)
Assist in raising awareness of rare diseases through the media
By participating in the survey you really will be helping to inform our work. If you are a patient organisation, please encourage your members to respond; if you work with people affected by a rare disease, please let them know about the survey. The more people that participate the more weight the results will carry!


The survey should take no longer than 20 minutes to complete. There are boxes at the end of every page if you would like to elaborate on your answers – all the additional information we receive will be extremely helpful, especially to inform the report on a strategy for rare diseases.
The survey is spilt into sections looking into:

· Research

· Diagnosis

· Commissioning and planning (treatment and specialist centres)

· Information and support

· Accessing coordinated care


The deadline for responses is the 31st of July

To participate in the survey please visit the following website:
http://www.surveymonkey.com/s/QZJM8PP

 

 


  

Congatulations to all our members who took part in the various walks across the country.

 


 

If you are selling on ebay why not donate a % to us? It's one of the easiest ways to raise money for charity.
Click logo for more details!

 


 
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