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novel findings of corneal neural features in fbn1 related marfan syndrome
Original title: “Novel findings of corneal neural features in FBN1-related marfan syndrome.”
Inspired by his family’s experience, Romain Alderweireldt developed a patient-led platform enabling remote, safe and active participation in genomic research. The post GEMS-App and the search for answers in Marfan syndrome appeared first on EURORDIS-Rare Diseases Europe.
Original title: “GEMS-App and the search for answers in Marfan syndrome”
Director Loeys-Dietz and Marfan for the Marfan Foundation Stacey Watson shares her first-person experience on the Hill today in Washington, D.C. Today I attended “Patient Advocacy Driving Innovation for People Living with Rare Diseases: A Congressional Briefing in Recognition of Rare Disease ... Director Loeys-Dietz and Marfan for the Marfan Foundation Stacey Watson shares her first-person experience on the Hill today in Washington, D.C. Today I attended “Patient Advocacy Driving Innovation for People Living with Rare Diseases: A Congressional Briefing in Recognition of Rare Disease Day” hosted by the National Organization for Rare Disorders (NORD). Stacey Watson represented the Marfan Foundation on the Hill for Rare Disease Day 2026 at a NORD event pushing for healthcare support. I was there both as someone living with Loeys-Dietz syndrome and as the Director of Loeys-Dietz and Marfan at The Marfan Foundation — but most importantly, I was there as part of a community. Rare disease is often perceived as uncommon or isolated. Yet 30 million Americans are living with a rare disease. Fewer than 5% of rare diseases have an FDA-approved treatment. Sustained innovation, access to care, and early diagnosis depend on strong federal policy. Alone we are rare. Together we are strong. The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes.
Original title: “"Alone we are rare, together we are strong!": Rare Disease Day Advocacy 2026 - Marfan Foundation”
personalized home based exercise training program in children with marfan and loeys dietz syndromes improves aerobic exercise capacity and health related quality of life
Original title: “A personalized home-based exercise training program in children with Marfan and Loeys-Dietz syndromes improves aerobic exercise capacity and health-related quality of life.”