Healthcare is rapidly changing.  Patients, their families, and their advocates are playing a bigger role in decision-making about their care.  In addition, the biopharmaceutical industry is realizing that patients can make a valuable contribution to the entire R&D process.  They are looking for patients (and others) who can influence the direction of research, the design,…

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Attending conferences has played a beneficial role in my understanding of the importance of my work.  I believe that in order to succeed at what you are doing you need a clear understanding of a shared goal but also an internal motivation to achieve that goal. I am also aware that the best way for…

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Sometimes you get the chance to experience something that resets your expectations. The Salem Oaks team had the opportunity to attend the Rare Patient Advocacy Symposium in Philadelphia on May 19, 2018.  The event was organized in partnership between Global Genes and the Orphan Disease Center at UPenn.  Although I may have only recently jumped…

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