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Anorectal malformations (ARM) and #Hirschsprung's disease affect a portion of the #digestive system and cannot be #diagnosed before birth. 🗞️ Learn more about these conditions & their patient advocates 👉share4rare.org/news/anorectal… #rarediseases #patientadvocavy #share4rarecommunity

📣 The III #MSMDS (Multisystemic Smooth Muscle Dysfunction Syndrome) and #ACTA2 Conference will be held in Danvers (USA) on June 5- 7th, 2025. More info & registration 👉 acta2alliance.org/events #rarediseases #raresyndromes

☀️ People with 𝗫𝗲𝗿𝗼𝗱𝗲𝗿𝗺𝗮 𝗽𝗶𝗴𝗺𝗲𝗻𝘁𝗼𝘀𝘂𝗺 have extreme sensitivity to #ultraviolet radiation, leading to severe #skin affectations. 📘 At #Share4Rare, we created a medical book with the collaboration of ASOCIACION XERODERMA PIGMENTOSUM España 👉 share4rare.org/library/xerode…

💡 Did you know there is a specific #EuropeanReferenceNetwork for rare 𝗻𝗲𝘂𝗿𝗼𝗺𝘂𝘀𝗰𝘂𝗹𝗮𝗿 𝗱𝗶𝘀𝗼𝗿𝗱𝗲𝗿𝘀? ern euro_nmd is a network of healthcare centres that works to boost research and improve the standards of care for these pathologies 👉 share4rare.org/news/euro-nmd-…

📬 Get regular updates about #Share4Rare and the latest #raredisease research! ✨ 💻 News, studies, events, training, medical books, and more... Subscribe to our newsletter 👉 share4rare.org/sign-up

📢We’re extending the period for submitting proposals for #collaborativeresearchstudies! 💜We encourage research on #rarediseases based on data provided by #patients ⭐️Patient organizations, academic entities, and scientific service companies: share4rare.org/news/new-deadl…

🆕 We have good news! 🚀 If you are a #Share4Rare patient organization member and want us to implement your project in our platform, you will receive a 25% reductions of our service costs. ⚠️ You have until August 31st to send us your proposal. 👉 share4rare.org/news/new-deadl…