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  • Ichthyosis Related Research
  1. Home
  2. Ichthyosis Related Research

Ichthyosis Related Research

Ichthyosis Support Group Research Grant

Ichthyosis Support Group Research Grant

Information about applying for a research grant or funding from the Ichthyosis Support Group Read more

Published: 12th November, 2024

Updated: 1st May, 2026

Author: Mandy Aldwin

Early Insights from Our England-Wide Ichthyosis Study – Dr Mark Eisner

Early Insights from Our England-Wide Ichthyosis Study – Dr Mark Eisner

Early findings from an ISG-funded nationwide ichthyosis study, using data from over 57 million people in England to build the most accurate picture to date. Read more

Published: 17th March, 2026

Updated: 18th March, 2026

Author: Mandy Aldwin

An epidemiological study of people living with ichthyoses across England

An epidemiological study of people living with ichthyoses across England

The Ichthyosis Support Group have funded a team of researchers based at Newcastle University to use different techniques to understand ichthyoses from the laboratory to ‘big-data’. Read more

Published: 7th December, 2024

Updated: 1st December, 2025

Author: Mandy Aldwin

New clinical trial looking at a potential new drug for treating Netherton syndrome

New clinical trial looking at a potential new drug for treating Netherton syndrome

BioCryst Pharmaceuticals are conducting a Phase 1 clinical trial looking at a potential new drug for treating Netherton syndrome Read more

Published: 24th January, 2025

Updated: 19th March, 2025

Author: Mandy Aldwin

Positive Data Revealed in Quoin Pharma's Netherton Syndrome Study

Positive Data Revealed in Quoin Pharma's Netherton Syndrome Study

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

Published: 14th January, 2024

Updated: 18th December, 2024

Author: Tej Sohi

Netherton syndrome Clinical Trials

Netherton syndrome Clinical Trials

Quoin Pharmaceuticals Ltd. is a clinical stage specialty pharmaceutical company. QRX003 is currently being tested in two separate clinical trials Read more

Published: 5th May, 2023

Updated: 13th December, 2023

Author: Mandy Aldwin

BPSU Study - Results of a national research study of newborn babies with collodion membrane.

BPSU Study - Results of a national research study of newborn babies with collodion membrane.

Read more

Published: 29th March, 2023

Updated: 13th December, 2023

Author: Liz Dale

X linked ichthyosis research paper (March 2020)

X linked ichthyosis research paper (March 2020)

Medical and neurobehavioural phenotypes in carriers of X-linked ichthyosis-associated genetic deletions in the UK Biobank Read more

Published: 12th May, 2020

Updated: 28th June, 2020

Author: Mandy Aldwin

Research on Autosomal Recessive Congenital Ichthyosis/Lamellar Ichthyosis

Research on Autosomal Recessive Congenital Ichthyosis/Lamellar Ichthyosis

Read more

Published: 6th May, 2020

Updated: 23rd May, 2020

Author: Mandy Aldwin

Ichthyosis vulgaris research update

Ichthyosis vulgaris research update

Filaggrin gene discovery Read more

Published: 6th May, 2020

Updated: 23rd May, 2020

Author: Mandy Aldwin

Research study in boys and young men with X-linked ichthyosis on hormones and puberty

Research study in boys and young men with X-linked ichthyosis on hormones and puberty

Research study in boys and young men with X-linked ichthyosis (XLI) completed. Read more

Published: 6th May, 2020

Updated: 23rd May, 2020

Author: Mandy Aldwin

UK rare disease research database for ARCI

UK rare disease research database for ARCI

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

Published: 6th May, 2020

Updated: 23rd May, 2020

Author: Mandy Aldwin

BADGEM/ISG Member Survey on Genetic Testing and Diagnosis

BADGEM/ISG Member Survey on Genetic Testing and Diagnosis

Anonymous survey of ISG members on experiences of genetic testing and diagnosis. Read more

Published: 6th May, 2020

Updated: 23rd May, 2020

Author: Mandy Aldwin

Behavioural and psychiatric phenotypes in female carriers of genetic mutations associated with X-linked ichthyosis

Behavioural and psychiatric phenotypes in female carriers of genetic mutations associated with X-linked ichthyosis

X linked ichthyosis research published: Behavioural and psychiatric phenotypes in female carriers of genetic mutations associated with X-linked ichthyosis Read more

Published: 5th May, 2020

Updated: 23rd May, 2020

Author: Mandy Aldwin

British Paediatric Surveillance Unit study of Severe Congenital Ichthyosis in Neonates (BPSU-SCIN)

British Paediatric Surveillance Unit study of Severe Congenital Ichthyosis in Neonates (BPSU-SCIN)

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

Published: 6th May, 2020

Updated: 23rd May, 2020

Author: Mandy Aldwin

Bullous Congenital Ichthyosiform Erythroderma

Bullous Congenital Ichthyosiform Erythroderma

Eradication of K1/K10 in the epidermis – a model for Bullous Congenital Ichthyosiform Erythroderma (BIE/EHK) therapy Read more

Published: 6th May, 2020

Updated: 23rd May, 2020

Author: Mandy Aldwin

Why Ichthyosis Skin is Scaly

Why Ichthyosis Skin is Scaly

Understanding why ichthyosis skin is scaly Read more

Published: 6th May, 2020

Updated: 23rd May, 2020

Author: Mandy Aldwin

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Latest

  • Faces of Ichthyosis: Paige

    Faces of Ichthyosis: Paige

    Explore Paige's journey with ichthyosis, embracing individuality and strength while overcoming life's challenges.

  • Faces of Ichthyosis: Elliot

    Faces of Ichthyosis: Elliot

    Elliot’s story highlights the resilience needed to live with ichthyosis and the challenges of daily skin care. He hopes people will look beyond his skin and better understand the impact of the condition.

  • Faces of Ichthyosis: Anthony

    Faces of Ichthyosis: Anthony

    Anthony’s story is one of determination, honesty, and quiet strength - showing that ichthyosis may shape daily life, but it doesn’t limit what’s possible.

  • Faces of Ichthyosis: Rosemary

    Faces of Ichthyosis: Rosemary

    Rosemary’s story is raw, direct, and deeply human - reminding us that behind every visible difference is a life just as rich, complex, and worthy of connection as any other.

Most read

  • Treatments Used in Ichthyosis

  • Palmoplantar Keratoderma (PPK)

  • X-linked Ichthyosis

  • Vitamin D

    Vitamin D

    Vitamin D is a vitamin which is essential for our health and well-being. Individuals with ichthyosis, in particular ARCI, including CIE/lamellar/harlequin ichthyosis, and epidermolytic ichthyosis, are at risk of Vitamin D deficiency.

  • Harlequin Ichthyosis

  • Inheritance of Ichthyosis Factsheet

  • Ichthyosis Overview

  • Eye Management in Ichthyosis

  • Udrate Cream

    We have received information about a new product similar to the discontinued Calmurid, and the following is for your information and guidance.

  • New product - Udrate

    New product - Udrate

    Following the discontinuation of Calmurid, Udrate is the new product available containing Urea and Lactic acid.

Ichthyosis and Epidermal Differentiation Disorders: What the New Term Means For You?

Ichthyosis and Epidermal Differentiation Disorders: What the New Term Means For You?

This article explains the recent changes in how we name some inherited skin conditions. This includes conditions like the ichthyoses and palmoplantar keratodermas. Read more

Published: 3rd September, 2025

Updated: 4th October, 2025

Author: Mandy Aldwin

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