ISG UK
@ISG_Charity
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The Ichthyosis Support Group (ISG) was formed in 1997 by a group of individuals affected by ichthyosis to create a network of parents, sufferers and medics.
UK
Joined June 2013
Huge Congratulations to our Medical and Communications Manager, Mandy for winning the Quality in Care Programme People’s Award for Dermatology last night! Nominated by her Consultant Dermatologist and voted the winner by the public, thank you for your support! #QICDermatology
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We are really excited about the prospect of being part of this awareness campaign in the coming months! #NethertonSyndrome #NethertonNow #ichthyosis
.@QuoinPharma $QNRX is pleased to announce the launch of its ‘NETHERTON NOW’ campaign to raise awareness of Netherton Syndrome. Read more here: #nethertonsyndrome #QNRX #nethertonnow #QRX003
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@QuoinPharma Looking forward to joining @QuoinPharma awareness campaign #NethertonNow #NethertonSyndrome
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We are looking forward to spending #RareDiseaseDay at the @RoyalHolloway educating students about #ichthyosis Come and speak to us!
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This #psychodermatology PhD position will focus on understanding the link between skin conditions including #ichthyosis and how they affect mental health. By studying the factors that affect mental health we can improve treatments and better support those affected.
New PhD position at @PsychCardiffUni now available with @BGGCardiff and @ProfARThompson examining the association between #genetic #skin conditions and #mentalhealth issues and investigating how best to alleviate the latter
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Positive latest news for those living with Netherton syndrome!
Quoin Pharmaceuticals $QNRX is pleased to announce further clinical evidence of QRX003 effectiveness in Netherton Syndrome. Read more here: #nethertonsyndrome #QNRX #clinicaltrials
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A new #Clinicaltrial is underway to help improve the condition #NethertonSyndrome. If you're living with or caring for someone with this rare condition, stay informed about this exciting opportunity for better care and #support. #ichthyosis Learn more
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💪 Advocacy – Raising awareness about #ichthyosis and advocating for improved care and inclusion of those affected in society at dermatology
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👩👩👧👦 Support Networks – Offering emotional support and connecting individuals with others affected by #ichthyosis through events and online communities.
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📚 Educational Resources – Providing information and resources to patients, families, and healthcare providers about managing #ichthyosis
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Ichthyosis community, do you have any top tips for managing #ichthyosis in the colder months? What do you do differently or avoid? Please share your top tips below 👇 Don't forget to visit our website #ichthyosisawareness #skinconditions #skindisease
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It was so exciting for our rare skin condition #ichthyosis to be in the spotlight via our Medical and Communications Manager, Mandy, winning this award in September.
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Do you have #ichthyosis, or do you know someone who does? Would you like to test a new form of support for a research study? Please see for information and to participate #ichthyosis #skincondition #skindisease #mentalhealth #mentalwellbeing
Call for participants in the UK living with #Skinconditions such as #Psoriasis #Vitiligo #Itchthyosis #Ezcema - In association with @vasiliou_vs we're looking for participants to test a new digital support intervention. Interested? More info here:
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It was great to catch up with everyone attending the British Society for Paediatric and Adolescent Dermatology annual meeting in Cambridge and to have some interesting discussions about potential collaboration with our @eczemasociety colleagues
Today, our Research Engagement Lead, Charlene, is at the British Society for Paediatric and Adolescent Dermatology Annual Meeting. The day will cover topics relating to paediatric & adolescent dermatology. 👀 We will be posting about the annual meeting throughout the day. 👇
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It was wonderful to raise awareness of and speak about the lifelong impact of #ichthyosis on patients and their families today. Invited by Professor Edel O'Toole, Mandy gave her presentation as part of the Genomics for Dermatology course at @ConnectingSci
#DermGenomics2024
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Well done #TeamISG for making this event for our members at @Barretstown a reality, but thank you to all the families who joined us to make this event the success it was. Presentations, discussion, fun, activities and dressing up #ichthyosis #skincondition #skindisease #support
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We are very excited to be hosting 24 hours of information, fun, activities, discussion, presentations and all things #ichthyosis with our members Medical Advisory Board, healthcare professionals and industry next week at @Barretstown in Co. Kildare, Ireland
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