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Parents, advocates tell Beaver County commissioners families need more nursing support as Rare Disease Day is proclaimed
Summary
At a February meeting, parents and advocates described gaps in home nursing and care for children with rare neurological conditions as the board proclaimed Feb. 28, 2026, Rare Disease Day; speakers urged expanded nursing support and local workforce development.
Beaver County residents and advocacy groups urged the Board of Commissioners to address shortages in home nursing and other supports for families of children with rare conditions during public comment at a February meeting.
"Hi. I'm Beth, Jabragovsky," said a parent who introduced herself as the mother of twin boys with a rare neurodevelopmental duplication syndrome, describing complex care needs including feeding tubes and seizures and saying specialists at a children's hospital help manage their care. "We have over 20 specialists…
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