We are in London this week, at the World Pharma Pricing & Market Access Congress, speaking and representing patients.
CDHi works to help CDH patients but in turn, all children and rare diseases by pushing the pharmaceutical world to work more collaboratively with patients and advocacy groups to develop and make more accessible drugs to help fight diseases and complications. Our CDH research database is a key ingredient in this.
For CDH, our children need better pulmonary drugs and vaccines to fight off respiratory illnesses, as well as better parental nutrition for those patients who cannot eat by mouth. CDH is a complex birth defect that requires a broad, long term overview to help survivors throughout their lives.
And of course, gene therapy may very well be on the horizon for our patients once the genetic cause is pinpointed.
Our role is to help connect the shareholders in these communities to bring real help to patients sooner.