Our Goals

To support research to improve diagnosis and treatment including a cure for the disease

To provide information and resources to better manage the disease

·    HCU treatment and dietary approaches

·    General disease management

·    Increased access for treatments and supplements

·    Research findings and opportunities for clinical trials

To create connections across the community and facilitate sharing of information and best practices through in-person and virtual events and discussions

To assure all patients are diagnosed as early and efficiently as possible to enable access to care and avoid complications.