Today is #UndiagnosedDay 🧩💙 NORD is proud to share resources to support #undiagnosed and #misdiagnosed patients throughout their journey, with the hope that they can find a correct diagnosis sooner. Learn more and explore resources on the NORD website today: bit.ly/4iAFiC3 #RareDisease #RareDiseases

Earlier this month, HHS discontinued the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) — the expert body responsible for reviewing conditions for inclusion on the federal newborn screening panel known as the Recommended Uniform Screening Panel (RUSP). The decision came just before a scheduled vote to consider including two treatable rare diseases, Duchenne Muscular Dystrophy (DMD) and Metachromatic Leukodystrophy (MLD). With the committee now inactive, progress on expanding access to early diagnosis and treatment for these rare conditions is on hold. NORD, and our network of 40 Rare Disease Centers of Excellence, are urging HHS to reinstate the committee. A strong, consistent national approach to newborn screening helps ensure all babies — regardless of which state they’re born in — have access to early detection for serious, treatable, life-threating and debilitating conditions. Learn more about the committee’s role, why newborn screening remains one of our most important public health tools, and why we need to ensure the committee’s involvement in the RUSP continues: nbcnews.com/health/health-ne… #NewbornScreening #RareDisease #RUSP #DMD #MLD #ACHDNC #HealthyBabies #PublicHealth