I attended the National Organization for Rare Disorders Breakthrough Summit in Washington DC last week. The focus of this year’s Summit was “Equitable Access to Innovation.” It was fantastic to spend time learning from and connecting with people linked by a shared passion to make the world better for the millions of people living with … Read more
Can personal stories drive change in newborn screening practices? “It’s appalling that the fate of a newborn is in the hands of a postpartum mother who doesn’t understand the signs her newborn is giving her, that he’s not getting the sugar he needs … It shouldn’t be on her to save his brain.” That is … Read more
We are thrilled to welcome Kristen Rohli, PhD as our new Research Manager! Kristen’s impressive educational experience working in biochemistry, psychology, and genetics makes her an excellent addition to our research team. Continue reading to learn more about Kristen! I grew up in Baton Rouge and chose to go to Louisiana State University (LSU) for … Read more
On Tuesday, Tai Pasquini, CHI’s Chief Research Officer attended the Pediatric Inclusion Roundtable: Effective Inclusion of Children Early in Clinical Trials in Washington, DC. The event was hosted by FARA, a rare disease patient organization, and Leavitt Partners, a law firm, along with stakeholders across the rare disease community. Prominent leaders from the FDA, NIH, … Read more
In our area of northern New Jersey, the Fourth of July parade is a lively, annual festival showcasing the work of various organizations; pre-schools and daycares, musical ensembles, sports teams, religious organizations, and volunteer groups will proudly march with their banners in-hand to share their passion with the community. It is a great small city … Read more