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2 articles matching "family"

ResearchCLINICALTRIALSMar 30

Trial Now Recruiting: Caregiving Networks Across Disease Context and the Life Course (NCT05007990)

This study is looking for 2,800 people to help researchers understand how being a caregiver affects a person's health and stress levels over time. The study includes caregivers of people with rare diseases like Batten disease, Tay-Sachs disease, and other inherited metabolic disorders, as well as caregivers of people with undiagnosed diseases. By learning more about caregiver stress, researchers hope to find ways to better support the millions of unpaid family caregivers in the U.S.

WHY IT MATTERSIf you or a family member care for someone with a rare inherited metabolic disorder, Batten disease, Tay-Sachs, or an undiagnosed disease, this study directly addresses the health challenges caregivers face and could lead to better support resources.
→ You can act on thisBatten diseaseTay-Sachs diseaseInherited metabolic disordersRead →
Clinical trialCLINICALTRIALSMar 26

Trial Now Recruiting: Natural History, Pathogenesis and Outcome of Melorheostosis A Rare Osteosclerotic Disease (NCT02504879)

Researchers are looking for people with melorheostosis, a rare disease where bones become abnormally thick and hard, to join a study. The study will follow participants over time to understand how the disease develops and what causes it. Doctors will do physical exams and collect medical information from people with the disease and their unaffected family members.

WHY IT MATTERSThis is an active recruiting trial sponsored by the National Institutes of Health that could help researchers understand melorheostosis progression and identify disease mechanisms, potentially leading to future treatments for this condition with limited research.
→ You can act on thismelorheostosisRead →

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