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  • Development of a needs assessment tool for caregivers of children affected with ichthyosis

    Development of a needs assessment tool for caregivers of children affected with ichthyosis

    Participants wanted to take part in an online survey for caregivers of children affected with ichthyosis Read more

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  2. Ichthyosis Related Research

Ichthyosis Related Research

Mindfulness research study

Mindfulness research study

Are you a parent or care of a child with ichthyosis aged between 8-11 years old? Would you like to participate in this research? Read more

Published: 24th May, 2022

Author: Mandy Aldwin-Easton

Development of a needs assessment tool for caregivers of children affected with ichthyosis

Development of a needs assessment tool for caregivers of children affected with ichthyosis

Participants wanted to take part in an online survey for caregivers of children affected with ichthyosis Read more

Published: 25th November, 2020

Updated: 25th February, 2021

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-Easton

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-Easton

Ichthyosis vulgaris research update

Ichthyosis vulgaris research update

Filaggrin gene discovery Read more

Published: 6th May, 2020

Updated: 23rd May, 2020

Author: Mandy Aldwin-Easton

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-Easton

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-Easton

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-Easton

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-Easton

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-Easton

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-Easton

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-Easton

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Showing 10 of 12

Latest

  • Mindfullness research study

    Mindfullness research study

    Are you a parent or care of a child with ichthyosis aged between 8-11 years old? Would you like to participate in this research?

  • ISG Cake Toppers

    ISG Cake Toppers

    Buy Ichthyosis Support Group and 25th Anniversary cake toppers at a discounted rate from Edibilis.

  • The Great World Bath off

    The Great World Bath off

    Raising money for the great work the ISG do for all our members, giving help, support and advice in the world of ichthyosis !!

  • 25th Anniversary Year Merchandise

    25th Anniversary Year Merchandise

    Free delivery on orders to help you raise awareness and funds for ichthyosis with our very special anniversary merchandise and collection box

Most read

  • New product - Udrate

    New product - Udrate

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

  • 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.

  • Treatments Used in Ichthyosis

  • Ichthyosis Overview

  • X-linked Ichthyosis

  • 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.

  • Harlequin Ichthyosis

  • Retinoids for Ichthyosis

  • Lamellar Ichthyosis

Summary of Ear Care in Ichthyosis Discussion Sessions

Summary of Ear Care in Ichthyosis Discussion Sessions

On Saturday 27th March 2021 members joined us on Zoom for 2 1 hour discussion sessions about Ear Care in Ichthyosis, held at 10.00am and 5.00pm. Independent ENT Nurse Practitioner, Jo Outhwaite, (previously from Birmingham Children’s Hospital) shared her expertise on ear care. Read more

Published: 21st April, 2021

Updated: 12th November, 2021

Author: Liz Dale

ISG's 25th Anniversary Year Appeal

ISG's 25th Anniversary Year Appeal

2022 is the ISG's 25th Anniversary Year and to celebrate this we are aiming to raise a minimum of £25,000. We need your help! Here you can make a donation, start a regular donation or set up a fundraising page.. Read more

Donate Fundraise

Published: 14th August, 2021

Updated: 10th April, 2022

Author: Mandy Aldwin-Easton

25th Anniversary Year Merchandise

25th Anniversary Year Merchandise

Free delivery on orders to help you raise awareness and funds for ichthyosis with our very special anniversary merchandise and collection box Read more

Published: 14th April, 2022

Updated: 28th April, 2022

Author: Mandy Aldwin-Easton

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