It was quite the sight for Amanda Cardiff as she watched her 5-year-old son spike the ball after his first touchdown, something she never thought she’d see because of his rare blood disorder. “He ran up to me and said: ‘Did you see me? Did you see my touchdown?” Cardiff said. Despite Drew Douglas-Cardiff’s love…
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“Sequestration” and its Drastic Effects for Rare Disease
Sequestration is a term to describe the massive across-the-board cuts that the federal government will impose on all non-defense spending starting in January 2013 if Congress does not act to stop it. This was a result of both parties not agreeing on a plan to cut the federal deficit. What does this mean for those of…
‘Disease Adovcacy’ Has Changed How Medical Research Is Funded
Repost from CBS Detroit ANN ARBOR — Patient-led advocacy has created a shift in the way the United States government prioritizes funding for medical research and has significantly changed the way policymakers think about who benefits the most from these dollars, says a public health researcher at the University of Michigan. In “Disease Politics and…
Resource Friday: Camp MakeBelieve Kids
Camp MakeBelieve Kids Children need skills, resources, strategies and protective factors so they may live according to the values set by school and community. A child may have good character but still not understand how to deal with strong feelings, or how to conduct himself appropriately with peers or people in authority. Camp MakeBelieve Kids…
Private Insurance and Pre-Existing Conditions for Children with Rare Diseases
One of the more popular provisions of the Affordable Care Act (ACA) prohibits insurance companies from excluding coverage for individuals with pre-existing conditions. For families with children suffering from extensive medical conditions due to rare disease, this is a welcomed feature of the new health care legislation. Parents who were in between jobs without coverage…