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healthcare reform Archive

Get Ready for Healthcare Reform

Posted by | 4:46pm on Monday, September 16, 2013 | 2 Comments

what are the top 5 things people can do to prepare? 

During a recent phone call arranged by the National Organization for Rare Disorders (NORD) to help members prepare for healthcare reform, Secretary of Health and Human Services Kathleen Sebelius told a story that any rare disease patient or caregiver can relate to.

It was about a nurse,whose name is Cathy Stoddart. Her son was born with heart defects that required multiple extensive surgeries.  Stoddart and her husband both worked and had insurance coverage, but each surgery resulted in thousands of dollars of out-of-pocket costs.  To save their son’s life, they used credit cards to pay the bills, which ultimately drove them into bankruptcy.  Today their son is alive and well and going to nursing school, but the Stoddarts’ credit history was damaged in a way that people in rare disease communities will be able to avoid in the future, thanks to healthcare reform. Read More

5 Questions for e-Patient Dave

If you haven’t heard of Dave deBronkart, popularly known as e-Patient Dave, you soon will. Diagnosed in 2007 with Stage…

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NORD Urges Action on Healthcare Reform

Jason Ross, Project Manager at Siren Interactive, contributes this post: Many Americans — especially those with rare disorders — are…

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