MAPLE SYRUP URINE DISEASE FAMILY

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The MSUD Family Support Group is a 501(c)(3) non-profit organization for those with Maple Syrup Uri

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1990

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COLUMBUS

Address: CO DAVE BULCHER958 MEDINAH TERRAC, COLUMBUSWeb: Sign in to see organisation websiteFacebook: msudfamilysupportgroupEmployees: 1Revenue: 67240ICO: 541556981

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** πŸ“… Monday, September 15 – TODAY. πŸ•‘ 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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Louis

How can we better support families affected by MSUD in navigating dietary restrictions and managing care throughout different stages of life?

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John

What strategies can the MSUD Family Support Group implement to raise awareness about Maple Syrup Urine Disease in communities and among healthcare professionals?

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Yvette

🌟 What an amazing initiative! Your support for families affected by MSUD is truly inspiring. Together, we can raise awareness and make a difference in the lives of these children! πŸ’–

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Andrew

πŸ‘ Thank you for all the hard work you do to support families dealing with MSUD. It's so important to bring people together and share knowledge. Keep up the great work! πŸ™Œ

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MAPLE SYRUP URINE DISEASE FAMILY

The Rare & Ready Coalition is hosting a free webinar to: βœ… Review recent state wins in newborn screening βœ… Discuss what’s ahead for our community βœ… Explore strategies to strengthen advocacy across states πŸ“… Tuesday, September 30 πŸ•‘ 2:00 – 3:00 pm ET πŸ”— Register here: bit. ly/AdvancingScreening This event is free and open to the publicβ€”please share with your networks. Together, we can make a difference for all families impacted by rare diseases.

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COLUMBUS

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