Members Events 2024

Our events are for members only, full details and registration information will only be available to members. Passwords may be required to register to attend our events. Members receive our quarterly newsletter and emails.

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24th April - Educational Health and Care Plan (EHCP) Presentation and Q&A (online)

Registration open!

1st June - Family Day at Beaulieu, Hampshire

Get together with individuals, adults and children and join us at Beaulieu for a day of fun with people of all ages, sharing info on living with ichthyosis. Experience the National Motor Museum, Palace House, and more. Meet companies with products for ichthyosis treatment. It'll be a fantastic family day out! https://www.beaulieu.co.uk/attractions/

Registration open - register now!

Password required for registration, please check your email (including junk folders) and newsletter for details.

14th September - Information Day, Perth, Scotland

Registration opening later this year!

Join us for a day filled with info, talks and meeting people. Dermatologists, nurses and researchers will share their knowledge and news of managing the condition. Connect with others, swap stories, and gather tips on living with ichthyosis. Companies will be available to share product samples. Children will have an opportunity to go to a nearby PGL Activity Centre

29th-30th October - Overnight event at Barretstown, Co. Kildare Ireland

Registration opening later this year!

Come spend a couple of days immersed in information, discussions, and socialising with others impacted by ichthyosis. Dermatologists, nurses, and researchers will update you on managing ichthyosis, sharing the latest research. Network with each other to exchange stories and advice for navigating life with ichthyosis. Companies providing products for ichthyosis management will be part of the event. Barretstown is also an Activity Centre at which children will be able to enjoy all kinds of exciting activities https://barretstown.org/.../how-your.../team-building

Children's residential camp dates to be confirmed

We can not wait to see you in 2024!

Latest

Members Events 2024

Put these dates in your calendar to join our member events in 2024
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).
Dr Fiona Browne
Polly Buchanan - Dermatology Nurse

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).
Amanda's story

Amanda talks in depth about living with Epidermolytic ichthyosis.
Children's Camps 2023

The residential activity camps are designed to be exciting and fun whilst encouraging social interaction and promoting personal development for children affected by ichthtyosis aged 8-16 years.
ISG Video Project

We have been awarded funding by the British Association of Dermatologists (BAD), to produce a series of videos portraying life with ichthyosis from the perspective of various types, ages, gender and ethnicity. Would you like to feature as one of our stories?
Host A Tea Party

Hold a fundraising tea party or bake sale to enable further research into ichthyosis, and help us continue supporting families and individuals affected by ichthyosis.
Youth Forum - British Society of Paediatric and Adolescent Dermatology (BSPAD)

Are you aged 16-25? Are you living with a skin or hair condition? The BSPAD would like to include the voices and priorities of young people in their work.
Recording of Epidermolytic ichthyosis (EI, EHK, KPI, BIE) Presentation and Q&A

The recording of the online Presentation and Q&A session.
Publish a patient perspective article for the BJD

The British Journal of Dermatology (BJD) are looking for articles written by dermatology patients (can be co-authored with a clinician), carers, and patient societies.
Carleen Walsh, ISG Mum, Awarded PhD for Ichthyosis Research

ISG Mum and researcher Carleen Walsh has been awarded a PhD doctorate in August 2022 for her research into the impact and implications of caring for a child living with ichthyosis.
25th Anniversary Year Collection Box

Help us fundraise and reach our target of £25,000 in our 25th (Silver) Anniversary Year with our new foldable cardboard collection boxes. Why not fill it with your loose silver coins - 5p, 20p, and 50p pieces.