Posts Tagged ‘rare diseases’
We Don’t Have 5 years!!
The moment was awkward. We had invited in a handful of patients who had the disease we were working to treat to our annual Development Team all-hands meeting. We wanted to learn from them and to be motivated by them. They poured their hearts out to us. They told us about their lives since the…Read More
This Symposium Was Truly Rare
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…Read More