HCU NETWORK AMERICA

Our Goals are to:
Support research that improves diagnosis and treatment including a cure

To provide information and resources to better manage the disease
- HCU treatment and dietary approaches
- General disease management
- Increase access for treatment 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.

HCU Network America works with patients, caregivers, clinics, medical professionals and researchers across the field to create a dialogue to develop tools and resources that benefit the community as a whole. We do this by survey's, one-on-one conversations, participating in community events and more.

From the conversations we have, we then take those items to our Board, Patient-Parent Advisory Committee, Cobalamin Steering Committee, and Fundraising Committee to find ways to improve and create the tools and resources that are presented during these conversations.

To support research that improves diagnosis and treatment including a cure, HCU Network America works with HCU Network Australia to award research grants focused on better therapies and diagnosis methods for Homocystinuria.

To provide information and resources to better manage the disease HCU Network America has a robust website full of resources. We also have a monthly newsletter, Homocystinuria conferences, and educational videos archived on our YouTube Channel. In addition to this, we help newly diagnosed patients find a clinic and connect them with our insurance navigator to ensure their medical formula and foods are covered by their insurance companies


To assure all patients are diagnosed as early and efficiently as possible to enable access to care and avoid complications HCU Network America is engaging the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC), as well as state labs and state newborn screening advisory committees.

In 2018 and 2020, HCU Network America has awarded to research grants. One was awarded to Ken Maclean, and the other was awarded to Tomas Majtan. Their work will hopefully help advance the treatment for Classical Homocystinuria patients. We will be issuing another

Over time numerous resources have been added to our website that our board and various committee's have developed. We have archived many educational webinars and our conference recordings on our YouTube Channel. We have held two homocystinuria patient meetings, one in 2018, the other in 2019. We will be adding additional educational content and videos, and our planning our next conference for 2021.

We have given testimony at ACHDNC in April and August 2019 and have spoken with several state labs. We have since established a Homocystinuria Newborn Screening Council to help us lead the charge in our outreach to state labs and state newborn screening advisory committees. We are working on engaging clinics to help them in our outreach to labs and state newborn screening advisory committees in hopes to start helping move the dial forward in getting state adopt a reduced methionine cut off and 2nd tier total homocysteine test.