New study aims to support families of children with rare diseases
NCT ID NCT06938542
First seen Jan 29, 2026 · Last updated May 21, 2026 · Updated 21 times
Summary
This study looks at the unmet palliative care needs of children with rare diseases and their family caregivers. Researchers will test a program called FACE-Rare to see if it helps families prepare for medical decisions and improves quality of life. About 480 children and their caregivers will take part. The goal is to learn how to better support these families.
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Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Contacts and locations
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Locations
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Children's National Hospital
Washington D.C., District of Columbia, 20010, United States
Conditions
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