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
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.
Treatment is expensive. The HealthWell Foundation gets it, and they’re here to help. Insurance companies don’t want to pay more than they have to for
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
What is Homocystinuria? Classical homocystinuria, or HCU, is a rare metabolic condition which its caused by a deficiency of the CBS enzyme. It results in
The HCU Network of America is not only trying to spread awareness and encourage research for homocystinuria, they were founded to serve as a resource