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Families and clinicians urge automatic patient‑specific emergency protocols for rare diseases after repeated ER failures
Summary
Parents, patients and clinicians testified in strong support of a bill requiring emergency medical providers to follow patient‑specific emergency protocols for people with rare diseases or special health‑care needs, describing repeated delays, misdiagnosis and trauma when ER staff did not follow documented specialist orders.
Multiple family members, clinicians and rare‑disease advocates testified in emotional detail about preventable harm in emergency settings and urged the committee to pass legislation requiring emergency clinicians to adhere to patient‑specific emergency medical protocols authored by a patient’s treating team.
Dozens of testimonies described similar patterns: patients with a known diagnosis or a documented specialist plan arrive at an emergency department during a flare or event; ER clinicians either do not access or do not accept the protocol and pursue a default diagnostic pathway that…
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