Families
Orphan diseases are isolating. When our son was diagnosed, we were told he was one of 10 cases globally. In reality, there are far more, we just don’t know about each other. If you have CDG or have a friend/family member with CDG, we’d love to connect.
Researchers
We’re starting with drug repurposing, but this is just the beginning of the potential for direct partnerships between patients and scientists. Early studies show gene therapy could be monumental for curing PIG gene disorders.
Large Scale Funding
If you know any people or companies that are interested in investing in larger scale follow on research, like gene therapy, we would love to hear from you.