We are very grateful to those who generously give up their time to support us by fundraising and raising awareness. Each fundraiser plays a vital role in helping us to continue with our work. We’d…
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On Saturday 8th May 2021 the online video call was started at 10.00am and the medical team introduced to approximately 30 of our members who had registered to join this virtual meeting. The team who…
ISG Zoom Meeting with registered ISG members in the company of Mr Raman Malhotra (Consultant ophthalmic and oculoplastic surgeon of Queen Victoria Hospital, West Sussex) on Saturday 17 April 2021 The ISG were joined by…
This online discussion session with Dr Will Davies (Senior Lecturer, Division of Psychological Medicine and Clinical Neurosciences, Cardiff University), Georgina Wren (research student, Cardiff University), Mandy Aldwin-Easton (Director and founder member ISG), Sarah Griffiths-Little (ISG…
Managing Treatment Resistance and Stress in Young People with Ichthyosis Zoom session 15 September 2022 On-line Q & A session with Dr Rukshana Ali (Paediatric Clinical Psychologist) and Dr Susannah Baron (Consultant Paediatric Dermatologist) both…
Researchers from the University of Birmingham and the Birmingham Children’s Hospital NHS Trust have undertaken a study in boys and young men with X-linked ichthyosis (XLI) which has recently been published in a medical journal…
Recruitment to this study is now closed. For this study, a caregiver is anyone who provides daily care over what is ‘typical’ for a child. She would prefer that the development of this assessment tool…
Update on Research on Autosomal Recessive Congenital Ichthyosis/Lamellar Ichthyosis Professor Edel O’Toole, Centre for Cutaneous Research, Barts and the London School of Medicine and Dentistry, London (ISG MAB) Transglutaminase 1 is an enzyme produced in…
We were thrilled to have 45 families register for our Family Conference at IWM Duxford, Cambridgeshire, representing a rich mix of single adults, couples, parents and children, grandparents, and everyone in between. Members travelled from…
Epidermolytic ichthyosis (EI, EHK, KPI, BIE) Presentation and Q&A Zoom session 18 November 2022 Do you have questions about Epidermolytic ichthyosis (EI, EHK, KPI, BIE)? Do you want to know more about it? Whether you…
