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Brown is also medicaldirector of Kennedy Krieger Institute’s Phelps Center for Cerebral Palsy. For many patients with rare diseases, unmet needs extend far beyond the medical or clinical manifestations of their conditions,” Brown told Palliative Care News in an email.
The lack of exposure not only complicates the ability of health care professionals to provide the care, it also floods potential referral organizations with clinicians who do not understand the nature or benefits of those services. A late referral often means that the patient will not receive the full benefits of hospice care.
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