Participants wanted to take part in an online survey for caregivers of children affected with ichthyosis Read more
Quoin, a specialty pharmaceutical company focused on rare and orphan diseases, announces additional positive clinical data from its ongoing open-label study evaluating the safety and efficacy of QRX003 as a potential treatment for Netherton Syndrome (NS). Read more
Quoin Pharmaceuticals Ltd. is a clinical stage specialty pharmaceutical company. QRX003 is currently being tested in two separate clinical trials Read more
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Medical and neurobehavioural phenotypes in carriers of X-linked ichthyosis-associated genetic deletions in the UK Biobank Read more
Filaggrin gene discovery Read more
Research study in boys and young men with X-linked ichthyosis (XLI) completed. Read more
The UK rare disease research database for autosomal recessive congenital ichthyosis (ARCI). We are looking for children and adults affected by ARCI to take part in our research study. Read more
Anonymous survey of ISG members on experiences of genetic testing and diagnosis. Read more
X linked ichthyosis research published: Behavioural and psychiatric phenotypes in female carriers of genetic mutations associated with X-linked ichthyosis Read more
National research project which will study all new babies born in the UK with harlequin ichthyosis (HI) or collodion membrane (CM) for 2 years from November 2018. Read more
Eradication of K1/K10 in the epidermis – a model for Bullous Congenital Ichthyosiform Erythroderma (BIE/EHK) therapy Read more
Understanding why ichthyosis skin is scaly Read more