HCU Network America
The HCU Network America strives:
- to inform and provide resources for patients and families, create connections, influence state and federal policy, and support advancement of diagnosis and treatment for Homocystinuria and related disorders.
- to support research that improves diagnosis and treatment including a cure for the disease.
- 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.
- to provide information and resources to better manage the disease. Resources include:
- HCU treatment and dietary approaches
- General disease management
- Increased access for treatment and supplements
- Research findings and opportunities for clinical trials
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Connect With HCU Network America
Patient Worthy Posts on Homocystinuria
When Jessica Karnes was a kid, she was told she was no longer allowed to eat chicken nuggets. As a self-proclaimed lifelong picky eater—and a four-and-a-half-year-old
In a recent article appearing in BioPortfolio, Orphan Technologies announced a Phase 1/2 clinical trial involving the first Classical Homocystinuria (HCU) patients to be treated with OT-58.
There is a great unmet medical need for patients living with metabolic disorders. There are few approved treatments for these conditions and many are fatal.
Most patients diagnosed with Homocystinuria (HCU), a rare metabolic disorder, don’t receive their diagnosis until later in life. Scientists were at a loss for why