ACT.md Blog

Finding answers for children with undiagnosed complex medical conditions

By Dan Kamyck | June 8, 2017 at 4:04 PM

Families of children with rare disease, especially undiagnosed illnesses, often wait years for answers. For Nicole Donoghue, a mom in North Carolina, the task of coordinating diagnostic efforts among the 10 specialists serving her young son ultimately fell in her lap. This meant the burden of piecing it all together fell to her. In her own words:

What I really needed was a medical quarterback helping me navigate all the results, the assumptions, and our options. But my son did not have a medical quarterback; he had a tenacious mom unwilling to let her son’s ailments go unanswered. But we ran out of time.
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New Report: "Transitioning to Adult Care" by Children's Hospital of Philadelphia

By Dan Kamyck | May 23, 2017 at 1:40 PM

The transition from pediatric to adult health care systems can be especially challenging for children with special health care needs, according to the latest Evidence in Action Brief from researchers at the PolicyLab at Children's Hospital of Philadelphia (CHOP).

What they learned: PolicyLab's surveys and interviews conducted in 2011, 2014, and 2016 all point to the same challenges in successfully transitioning to adult care, including a lack of resources for multidisciplinary care, problematic workflows for patients and families, and unaccommodating physical spaces.

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