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A total of 267 posts are filed under Series
Sick But Social: PICC Lines and Ports
By Stacey Philpot Like many, the early stages of my diagnoses were often fraught with a rapid, fluid exchange of emotions and thought… Continue Reading
Not Quite Empty Nest: Grief and the Special Needs Parent
By Kate Welch When my son Caleb was born in 1996, he was taken from me by ambulance before he was  12 hours old to have open-heart surgery… Continue Reading
RARECast: A Controversial Approval for a Duchenne Drug and What Lies Ahead
  The controversial approval of Sarepta Therapeutics Eteplirsen to treat a certain form of Duchenne Muscular Dystrophy has been viewed as a… Continue Reading
RARECast: Matchmaker Exchange Helps Rare Disease Community “Find Me a Find!”
  As databases containing the genetic information of individuals proliferate, an opportunity for physicians, researchers, and individuals… Continue Reading
RARECast: The Promise of RNAi for Hereditary Angioedema and Other Rare Diseases
  Hereditary angioedema is a rare genetic disease that causes episodes of severe swelling. The swelling can occur in the limbs, face,… Continue Reading
Are You Ready Concept
Adapting to Limitations: Making the Big Decisions Easy
by Joan Friedlander Are you at a point where you feel like you’re ready to step up your engagement in the world, yet concerned that if you… Continue Reading
Life with Ehlers-Danlos: Handicap Tips for Stadium Seating
September means a lot of things. It’s the time when it’s officially acceptable to add pumpkin spice to everything. (Thank goodness!) In… Continue Reading

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