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  • tell-your-story
  1. Latest
  2. In The Media
  3. Tell Your Story

Tell Your Story

Would you like to tell your story in the media? - Why not consider being a Case Study?*

By raising awareness of what we do in the national and local press we can reach more people. We rely on personal stories to help us engage readers around our cause and bring stories of living with ichthyosis to life.

Your story can encourage those who see it to get support, or may inspire them to donate or fundraise for us. Some people who’ve shared their story find it a cathartic experience. It makes them feel good to give something back.

We receive various requests for people willing to tell their story through the media.  Freelance journalists, some of who we have worked with in the past, and have previously published stories about ISG members regularly contact us. Participants are often paid and some will also receive a set of professional photos.  The aim is to get stories into the national newspapers but otherwise they will appear in women’s magazines. If you are interested in talking to journalists and telling your story please let us know so we can pass your details on when opportunities arise.

To submit your case study complete a form by clicking here.

*It is entirely the programme maker’s/journalist’s decision on which family they decide to use for their series/stories.

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Latest

  • A comparison of symptoms of distress and associated risk factors in XLI, IV and psoriasis

    A comparison of symptoms of distress and associated risk factors in XLI, IV and psoriasis

    Participants needed for a study which aims to better understand the frequency and severity of distress associated with these conditions, and to try and understand what might contribute to this.

  • Donations for Steve to the ichthyosis society

    Donations for Steve to the ichthyosis society

    My son Steve Evans unfortunately recently died of covid, he had ichthyosis. We would like to raise more awareness of the issues that people have with this disease..

  • 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.

  • Prescribing issues - NHS England

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  • Accessibility

  • Seasonal Winter Get Together

    Seasonal Winter Get Together

    Come together virtually for our ‘Seasonal Winter Get Together’. A fun filled evening of entertainment including talent competition, fancy dress and quiz.

  • 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.

  • The Giving Room

    The Giving Room

    If you are using video platforms such as Zoom or Teams now you have the opportunity to raise money for us at the same time with our virtual backgrounds.

  • Donate

    Donate

    As a registered charity any donation you wish to pledge will be gratefully received and will benefit the support group and its ability to help all the people who are affected by this family of conditions.

  • Privacy Policy

  • Meet our members

    Meet our members

    Some of our members have generously shared their personal stories of living with ichthyosis. These stories feature many types of ichthyosis from a wide range of people.

  • Body Image Dissatisfaction

    Body Image Dissatisfaction

    Participants needed for a study exploring experiences and body image dissatisfaction in association with dermatological conditions including ichthyosis.

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  • Example - Our impact

    Inspire visitors with all the amazing change you've achieved. It's your chance to show off!

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Ichthyosis Support Group
PO Box 1242
Yateley
GU47 7FL

+44 (0)845 602 9202
[email protected]

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© Copyright 2015 Ichthyosis Support Group (ISG) Registered Charity Number: 1142457
Ichthyosis Support Group is a company limited by guarantee | Registered in England and Wales | Company registration number 7609904