Featured Articles
Ichthyosis vulgaris research update April 2012
Ichthyosis vulgaris research update ~ Dermatology & Genetic Medicine, Dundee, April 2012 Filaggrin gene discovery The research group in Dundee, Scotland, led by Professor Irwin McLean first discovered the changes in the filaggrin gene that cause ichthyosis vulgaris in 2006. Since this time we have been working hard to learn more about the filaggrin gene [...]
Ichthyosis Support Group Small Research Grant 2012 – now open to applicants
In 2012 we have a £5,000 grant available for research on ichthyosis. The applications will be assessed by the Medical Advisory Board of the ISG, all of whom have expertise in this area. The closing date for applications is the 30th June 2012. Completed application forms are then forwarded on to the Medical Advisory Committee [...]
Centre for Appearance Research (CAR) launches FACE IT, a new online support programme for adults who have a condition that affects appearance.
In November 2011, CAR welcomed health professionals from around the UK to the launch of ‘Face IT’, their online support programme for adults with appearance-related distress as a result of a condition, injury or medical treatment that affects their appearance; for example, those with a skin condition such as ichthyosis, with burns or surgical scarring [...]
Make sure your view of the Consultation on the UK’s Plan for Rare Diseases is heard!
Earlier diagnosis of a rare condition and better co-ordinated care will help improve the quality of life for people with rare diseases and their families, according to the first ever UK plan on rare diseases, published for consultation by the Department of Health. To ensure that the views of patients, patient organisations and medical professionals [...]
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. Some items are shown below, but to view all items and to purchase any merchandise visit our [...]
How do you access new therapies and healthcare services – participate in the survey
How do you access new therapies and healthcare services? As a patient, caregiver, or patient advocate of rare diseases, your views are very important to helping understand access to quality healthcare issues and challenges. In order to gather your views on these issues, we would like to invite you to participate in a survey. The [...]