🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

Time is running out to help us win £500 by entering #easyfundraising's Egg Hunt🥚 Plus there are daily chances to win £100 & £200 donations🤩 Solve the clue & find the egg every day this week, before April 20th🐰  Not signed up? Get involved today🥰 easyfundraising.org.uk/clue-the-egg-h…

🌞Struggling in the heat? You're not alone. The hot weather is super tough for those living with #EctodermalDysplasia Please check out the cooling section on our website for advice & tips - edsociety.co.uk/support/temper… Please contact us if you need help or just someone to talk to💙

🦷Had a dental #implant in the UK/Ireland & have #EctodermalDysplasia? Take our quick survey to help gather data on the age at first #dental implant, to help highlight regional differences & guide better, more consistent care for the ED #community. 👉🏼surveymonkey.com/r/LW3MMYC

🎉 Family Day Programme is Here!🎉 We’re excited to share the finalised programme for the Family Day at #ICED25 — packed with insightful sessions, expert talks & opportunities to connect with others in the #EctodermalDysplasia community 📝View here: edsociety.co.uk/wp-content/upl…

After a busy & insightful first day at #ICED25 it’s fantastic to see medical professionals, international organisations & global leaders coming together to connect at our ICED-breaker with drinks and canapés. 🌍🥂 A brilliant start to the conference! #EctodermalDysplasia

A powerful presentation by Dr. Gabriela Petrof this morning, Consultant Dermatologist at #GOSH In her talk “How the Skin is Affected in Different Types of #EctodermalDysplasia” Dr. Petrof brought valuable clinical insight into the wide-ranging skin symptoms experienced across ED

🗣️Live now at #ICED25: Session 5 – #Psychology & Social Science. Hannah Harpin shares her #AEC journey, followed by Dr. Kerry Montgomery on stigma & reproductive decision-making.

👂🏻 Listening to our ED families: Session 6 at #ICED25 wraps with Dr. Amanda Swanson sharing insights on the real-life experiences of families living with #EctodermalDysplasia.

Good morning from our #ICED25 Family Day! We're welcoming families & individuals living with #EctodermalDysplasia to meet some of the top experts in the field. We have been spotlighting many of our speakers throughout this week day — keep an eye out & say hello if you see them🤩

Family Voices Matter – #ICED25 Family Day👨‍👩‍👧‍👦 Honoured to welcome Giulia Volpato, EEC advocate & president of p63 E.E.C. Intl. Assoc. sharing “The Involvement of the Patient.” “Together, in our daily struggles, we can do much.” Thank you for your strength, story & leadership!💙

🚨Big News from #ICED25 🧬New NHS Support Network for #EctodermalDysplasia Patients Today is the official launch of a Rare Disease Collaborative Network (RDCN) dedicated to #EctodermalDysplasia & related conditions

A special session chaired by Prof. Clarke, sharing key insights from 2 days of cutting-edge ED research & care 👩‍⚕️Dr. Thornton – Family/sibling studies 🌡️Prof. Tipton – Thermoregulation 🧴Dr. Petrof – Skincare in ED 🧬Prof. Schneider – EDELIFE trial Science meets our community 💙

💭 Ask the Experts: Q&A happening now at #ICED25! ED families & medical professionals are sharing stories, challenges & solutions. Led by CEO Diana Perry & Amanda Swanson, this session opens the floor for real talk, support & stronger connections. 👨‍👩‍👧‍👦🤝 #EctodermalDysplasia

🌟That’s a wrap on #ICED25🌟 What an amazing few days in #Birmingham! Huge thanks to families, ED individuals, professionals, speakers & supporters who made it so special💙 From big announcements to real connection — you made it unforgettable Until next time👏#EctodermalDysplasia

📣 Heatwave: Stay Cool & Safe! With extreme temperatures across the UK this week, we want to remind our ED community to stay cool & look after yourselves💧 🌡️Overheating can be dangerous, so prevention is key 🧊 Visit the Cooling section on our website 👉🏼edsociety.co.uk/support/temper…

👩‍⚕️This week we are in Glasgow attending the 105th Annual Meeting of the British Association of Dermatologists #BAD2025 We’re here alongside dermatologists, researchers & other patient support groups representing the ED community & raising awareness of #EctodermalDysplasia🧬

💃Lola is an incredible dancer with #EctodermalDysplasia & with years of hard work & determination she’s earned her place on the world stage! We’re proud to sponsor Lola on this amazing journey & honoured to have the ED Society featured on her team kit💙 edsociety.co.uk/support/ed-com…

We've been awarded a £5,000 grant from the #JeansforGenes Grant Programme 🥳👖 This generous support will make a real difference to our work & the families we support. We're incredibly grateful to the grant panel, who "are keen to help us continue our mission."🤩 Thank you 🙏🏼

☀️The temperature is soaring & that's tough for those affected by #ectodermaldysplasia 💡How are you staying cool? 📸Share a photo of your cooling setup 🔥Any favourite tips, tricks or cooling hacks to share? Let’s help each other beat the heat❄️

🎉Great news! We've been awarded £1,000 from the British Association of Dermatologists (BAD) Patient Support Group Funding - which will help us update our resources with our new logo & branding. Keep your eyes peeled — we can’t wait to share our updated materials with you soon👀