HCU News & Events
HCU Network America's, 2018 Taking the Lead for HCU Conference Report and Conference Archive Website are now available to view.
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Ways to Get Involved!
Medical Nutrition Equity Act
Passage of the Medical Nutrition Equity Act would require all private and public insurance plans to cover formula and low protein modified foods for children and adults.
Helping Hands for HCU:
A collaborative effort of patients, clinics &
HCU Network America
We are asking for patients to help us connect with their metabolic team. In return, we will provide them resources to help better your care and the care of other patients.
If you are willing to make an introduction for us with a member of your metabolic care team contact us at: [email protected]
Patient Clinic Survey
There are approximately 100 metabolic clinics throughout the US alone. One of the goals of HCU Network America is to connect with each clinic individually and establish a working relationship so we can help ALL patients and families affected by HCU.
Because there are so many clinics, we need your help!
Please know your identity will remain anonymous!
Our Mission
The mission of HCU Network America is to help patients with HCU and related disorders manage their disease and to find a cure
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
Donate
Help us reach our goals and fulfill key patient needs by making a donation today!
