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
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ISG UK retweeted
#WHO has opened a public consultation on its draft Global Action Plan for Skin Diseases.
Your input can help shape how countries act and ensure accountability for the 2B+ people affected.
🗣️ Make your voice heard
📅 Deadline: May 10, 2026
👉 who.int/news-room/articles-d…
ISG UK retweeted
Day 3 of #GSChampion2025 kicked off with Jeremy Foreman of Pfizer, who shared how AI can boost skin health by listening to more voices, speeding up treatments, and improving access—highlighting Pfizer’s Accord and the themes of Listen, Learn & Lift. #GlobalSkin #Dermatology
ISG UK retweeted
And taking home The People’s Award for Dermatology is Mandy Aldwin-Easton, Ichthyosis Support Group @ISG_Charity #QiCDermatology #awards #recognition #dermatology #skinconditions @SanofiUK
ISG UK retweeted
An inspirational (ongoing) patient symposium at #ESDR2024 providing a humanistic reminder of the importance of continued rare disease research. @Pachyonychia @ISG_Charity
ISG UK retweeted
We're excited to share that our European roundtable on under-researched skin diseases that we co-hosted earlier this year with @ESDRorg has been featured in the Journal of Investigative Dermatology. Read now: bit.ly/3LtSGtC #GlobalSkin #Dermatology #Research
ISG UK retweeted
Incredibly moving, passionate, and inspiring talk from Mandy Aldwin-Easton and Dr. Mellerio on ichthyosis @ISG_Charity. A perfect exemplar of the importance of patient and public involvement and the need for further research for this condition and #rarediseases. @HealthySkin4All
ISG UK retweeted
talkhealth is teaming up with a team of experts from the @BSFcharity to answer your questions on #psychodermatology.
Find out more about @eleanorchats, Dr Alexandra Mizara and @ProfARThompson, and post your questions here: email.talkhealthpartnership.…
#BritishSkinFoundation
ISG UK retweeted
High costs should never come between you and the treatment of your skin condition. Join the #GRIDDStudy today and play your part in ensuring that care reaches everyone equally, regardless of their socioeconomic status. globalskin.org/GRIDDStudy
#ResearchStudy
ISG UK retweeted
🥳Excited that a 4th paper arising from my PhD
@BamfordCentre @UlsterUni,co-authored
@GerardLeavey @mmclaughlin14, is now published
@BMJ_Open. Theoretical FW & key recom for⬆️INFORMATION SHARING in HC settings. #RareDisease #FamilyCaregivers #Skin #Coping. bmjopen.bmj.com/content/13/7…
ALT Research made possible by @ISG_Charity @FIRST_Skin, the international expert group & all the caregivers who participated from across 10 countries & 5 continents #ichthyosis. Thank you to all involved.
ISG UK retweeted
📢Protocol Alert @BamfordCentre
Want to ID meaningful global patient/family health outcomes, develop and/or validate an outcome measure,check our #MixedMethod #NovelConsensusApproach #InclusivePPI for dev #NeedsAssessment #SeverityScale #RareDisease
bmjopen.bmj.com/content/13/1…
RT🙏
ISG UK retweeted
Arrythmias associated with Xp22.31 deletion (XL #ichthyosis) - STS a candidate gene
#OpenAccess: bit.ly/3OfVLOC
#Dermatology #CardioTwitter @WrenGeorginaCU @EmB1105 @JFGUnderwood @ProfARThompson
@GeorgeKirov1 @ValentinaEPrice @DrWillDavies77 @NCRN_Wales @ISG_Charity
ISG UK retweeted
We are still recruiting! We are looking for parents or carers of a child living with a visible difference to take part in a Mindful Parenting study. Contact me here or on [email protected] for more information.
ISG UK retweeted
A brilliant opportunity to celebrate the hard work of our #CIDS student, Talia, this summer. @DrWillDavies77 and I have had the pleasure of working with Talia as part of an Innovation and Industry project, supported by the @ISG_Charity. Looking forward to seeing the results soon!
ISG UK retweeted
Perspective piece from our Patient Associate Editor @OliviaHughes___ on the importance of integrating psychological support into dermatological care.
onlinelibrary.wiley.com/doi/…
#PsoLiveWell #PAW22
ISG UK retweeted
We are looking for parents and carers of a child living with a visible difference to take part in an online Mindful Parenting programme.
Please share and contact me for more information.
#mindfullness #Wellbeing #stress
ISG UK retweeted
Our challenge for the Ichthyosis Support Group ichthyosis.org.uk/Fundraiser…
Walk happening tomorrow and for a very good cause!
ISG UK retweeted
The @BrJDermatol are looking for perspectives submissions from people with skin conditions including written papers, images, poems, videos, stories, and essays!
Email [email protected] for more info
ISG UK retweeted
Thoroughly recommend this book to anyone who has an interest in dermatology - very enjoyable read and thought provoking. @_BDNG
ISG UK retweeted
I’ve never been prouder to be British.
#PlatinumPartyAtThePalace
ALT The Queen having tea with Paddington bear at Buckingham Palace