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We are looking forward to spending #RareDiseaseDay at the Royal Holloway educating students about #ichthyosis Come and speak to us! ichthyosis.org.uk

We are really excited about the prospect of being part of this awareness campaign in the coming months! #NethertonSyndrome #NethertonNow #ichthyosis

Please take 2 minutes to nominate us! New this year, Draw 2 of the £1,000 #MovementForGood Awards is a boosted draw! 🎉 We could be 1 of 100 charities to have the chance to win £1,000, doubling the usual number of winners! Please nominate us today at movementforgood.com/index.php?cn=1…

Our skin is rare, we have #ichthyosis. For millions living with a rare dermatological disease is a reality. But our skin, though different, is still beautiful and worthy of understanding. As Rare Disease Day approaches, let’s shine a light for #RareDiseaseDay #RareDerm

We can not wait for the first and future installments, and you might even spot one of us! It's wonderful to see this awareness purely for #NethertonSyndrome

🌟 Georgina, living with the rare genetic condition #Ichthyosis with confetti, has had 2 healthy children thanks to cutting-edge genetic testing & PGT (IVF). Her journey proves the power of science & love. 💖 bbc.co.uk/news/articles/…? #IchthyosisAwareness #PGT #GeneticTesting

🏃‍♀️Join a Fun Run for a Great Cause! 🏃‍♀️ Sign up for a junior or family run event near you and raise awareness for #ichthyosis! From Thorpe Park to Alton Towers, and local festivals, there’s an event for the whole family. Find events and sign up at ichthyosis.org.uk/fundraising-ev… 👟

People with ichthyosis are waiting months or even years for dermatology care—this is unacceptable. By the time they see a specialist, many are in crisis, dealing with pain, infection & emotional distress. bbc.co.uk/news/articles/… #Ichthyosis #Dermatology #SkinConditions #BBCNews

This is Dr Theocharopoulos, training to become a Dermatologist)! Here he's wearing his ISG tshirt on a 20km hike yesterday in Patagonia! Not only is he raising awareness but he and 3 friends are running the Battersea Half Marathon next Month for us. See ichthyosis.org.uk/fundraisers/mi…

We're proud to be attending #GSChampion2025

A fabulous 1st full day at #GSChampion2025

Such an important area to discuss and collaborate to support our #ichthyosis community #GSChampion2025

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

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

Thank you for your show of support GlobalSkin #ichthyosis #skin #IAM2025 #IchthyosisAwareness

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 Guy's and St Thomas' A huge thank you from us. Find out more at ichthyosis.org.uk/fundraisers/mi…

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…

Skin conditions affect around 60% of UK population (British Skin Foundation), including many constituents. Wes Streeting Michael Gove Keir Starmer Karin Smyth Support the need for addressing the World Health Organization (WHO) global public health priority of skin diseases! Get behind the #SkinDiseasesResolution

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