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Home - MSUD Family Support Group MSUD Is A Rare Disease MSUD is a rare disease affecting an estimated 1 in 185000 infants worldwide. The condition gets its name from the distinctive sweet odor of urine and earwax in affected infants. If untreated MSUD can lead to developmental delays seizures coma and death. A strict diet and careful medical monitoring is essential throughout the lifespan.
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MAPLE SYRUP URINE DISEASE FAMILY
Don’t miss these powerful rare disease sessions, open to families, caregivers, and professionals: ✨ Rare Disease Grief is a Sneaky B**: Grieving a RARE Diagnosis** 📅 Monday, September 15 – TODAY. 🕑 2:30–4:00pm ET A rare diagnosis brings unique and ongoing grief. This session will explore the complexities of that experience and provide strategies for managing uncertainty, chronic stress, and emotional challenges.
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MAPLE SYRUP URINE DISEASE FAMILY
The Rare & Ready Coalition is hosting a free webinar to: ✅ Review recent state wins in newborn screening ✅ Discuss what’s ahead for our community ✅ Explore strategies to strengthen advocacy across states 📅 Tuesday, September 30 🕑 2:00 – 3:00 pm ET 🔗 Register here: bit. ly/AdvancingScreening This event is free and open to the public—please share with your networks. Together, we can make a difference for all families impacted by rare diseases.
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