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.
Joined June 2013
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901 Photos and videos
Pinned Tweet
May 1
Today marks the start of Ichthyosis Awareness Month, and we will be sharing voices from people living with #ichthyosis, also now known as Epidermal Differentiation Disorders, a group of chronic #genetic #skin conditions.
Visit ichthyosis.org.uk
#IAM2026 #RareDisease
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May 8
Ibrahim has Lamellar Ichthyosis and is from Ilford.
He's smart, kind, intellectual and according to his siblings, also handsome and good at maths!
He loves reading, basketball, and gaming, something that might surprise people is just how confident he is.
ichthyosis.org.uk/ibrahim
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May 8
Robyn is from Manchester and lives with Netherton Syndrome but that’s only a small part of who she is ❤️
What might surprise people most is just how resilient she is. Robyn is a true fighter - nothing holds her back.
Read Robyn’s full story here:
ichthyosis.org.uk/robyn
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May 6
🎙️ Podcast Episode – Lesley’s Story
In this #podcast, Lesley shares her family’s journey living with #ichthyosis, including the experience of receiving a changed diagnosis from Ichthyosis Vulgaris to a form of Palmoplantar Keratoderma (PPK).
🎧 Listen now tinyurl.com/kexs3br2
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May 6
We’re pleased to host an online session on X-linked ichthyosis (STS-sEDD) with Dr Will Davies on 1 June, 8pm.
Focusing on extracutaneous features - including neurodevelopmental, cardiac, reproductive & ocular.
Dr Davies will also share updates on upcoming research.
#ichthyosis
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May 4
The impact of living with #ichthyosis is profound.
In this video, researchers explain why continued #funding is so important, particularly for the rarest and most underrepresented forms of the condition.
youtu.be/yCjLn2Tcot0?si=hsfw…
#IAM2026
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ISG UK retweeted
Apr 21
#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…
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Feb 27
Living with a rare skin disease can mean daily treatments, visible differences, and constant questions - but it also means resilience, strength, and a community.
Rare is not alone. Rare is powerful. Rare is human.
#RareDiseaseDay #RareDERM #ichthyosis
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Feb 27
My Skin is RARE.
Behind every diagnosis is a person. A family. A story.
Rare forms of ichthyosis affect around 1 in every 100,000–300,000 births depending on the type. That means many people go through life never meeting someone else with the same condition.
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Feb 25
Some people say, “It’s not a disease, it's not contagious", but it is classified as a disease because it is a genetic disorder that affects the skin’s ability to function normally. It requires lifelong management and can impact physical health, mental wellbeing, and daily life.
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17 Dec 2025
Help us fill our Christmas line with festive jumpers & socks and raise £500 🧦🎁
visufund.com/christmas-jumpe…)
Pick a jumper or socks, donate & leave a message 💛
Spread warmth and festive cheer this Christmas 🎅✨
Thank you!
#GiveJoy #FestiveGiving #SpreadTheCheer 🎄
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21 May 2025
We visited Dermal Laboratories last week to help their team understand more about #ichthyosis — types, severities, real-life impact, and key treatments.
#skincondition #skindisease #patientadvocate
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15 May 2025
Skin conditions affect around 60% of UK population (@BSFcharity), including many constituents.
@wesstreeting @michaelgove @Keir_Starmer @karinsmyth Support the need for addressing the @WHO global public health priority of skin diseases! Get behind the #SkinDiseasesResolution
13 May 2025
🌎 The #SkinDiseasesResolution calls for an integrated approach to address all skin conditions. It will help improve access to care, support earlier diagnosis and lead to more accessible treatments benefiting billions of people globally.
Learn more: skinhealthcoalition.org/reso…
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14 May 2025
It's #IchthyosisAwarenessMonth so let's hear about one family's experience of living with X linked #ichthyosis. This condition is increasingly being recognised as a multi system, syndromic form of the condition!
#rareskindisease #geneticdisease #IAM2025
youtu.be/doKIZNGzmIU?si=PsMV…
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11 May 2025
Congratulations to this wonderful team for running the Battersea Park Half Marathon yesterday to raise awareness of #ichthyosis and funds for us. Led by Dr Theocharopoulos working in #rareskindisease at @GSTTnhs
A huge thank you from us. Find out more at ichthyosis.org.uk/fundraiser…
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6 May 2025
5 May 2025
May is #Ichthyosis Awareness Month. This rare genetic skin condition is present from birth and requires lifelong care. #GlobalSkin stands with its Members to raise awareness and advocate for better support for those affected. bit.ly/4k2BZol
#IchthyosisAwareness #IAM2025
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30 Apr 2025
The World Health Assembly (WHA) Skin Resolution is a groundbreaking initiative that recognises skin diseases, including ichthyosis. as a global public health priority. ACT and support today @wesstreeting globalskin.org/advocacy-1
#SkinDiseasesResolution #Ichthyosis
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28 Apr 2025
Powerful global advocacy stories, inclusive education with patient advocates and a strong push for the #SkinDiseaseResolution. Let’s raise our voices together and push for change for skin conditions. For resources visit globalskin.org/advocacy-1
#ichthyosis #GSChampion2025
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ISG UK retweeted
27 Apr 2025
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
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26 Apr 2025
Such an important area to discuss and collaborate to support our #ichthyosis community #GSChampion2025
25 Apr 2025
"Caring for the Mental Health Burden of Skin Disease" has been eye-opening #GSChampion2025 session. Speakers shared lived experiences & bold ideas to support mental health in skin conditions. Let’s keep breaking stigma & building empowered communities.
#GlobalSkin #MentalHealth
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