Make a Difference!
HCU News & Events
Save the Date!
Start spreading the word, we have our first Homocystinuria conference!
Our first conference is scheduled for the weekend after the Boston Marathon, April 21 and 22, 2018 in Westford Massachusetts!
Share this exciting news with your metabolic team.
October: HCU Awareness Month
Natural History Study of CBS Deficiency
Orphan Technologies Ltd is looking for male and female patients between, the ages of 5 to 65 years who have been clinically diagnosed with Homocystinuria
Contact: Ann Kuan (781) 966-3822
United States, Georgia
Emory University, School of Medicine Department of Human Genetics
Decatur, Georgia, United States 30033
United States, Massachusetts
Boston Children's Hospital
Boston, Massachusetts, United States 02115
United States, Pennsylvania
The Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, United States 19104
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: HCUNetworkAmerica@gmail.com
BioCom Consulting Interviews
Medical Nutrition Equity Act
Biocom Consulting is looking to interview individuals diagnosed with classical homocystinuria (CBS deficiency) in order to better understand the impact of the disease on patient quality of life. This information will be used to inform future studies in the area of classical homocystinuria.
In order to participate, individuals must meet the following criteria:
Be diagnosed with classical homocystinuria (HCU)
Fit one of the following categories:
-Caregiver/ parent of a child with HCU
-Young adult (18 – 30 yrs old) with HCU
-Adult not diagnosed through newborn screening
-Be willing to sign a consent form indicating the confidential nature of the research and that they are a willing participant.
The research will be confidential and no personal information will be shared.
If eligible, the research would require a 1 hour phone call at an agreed upon time.
If interested in participating, please contact Maura at maura@biocomconsulting.
The mission of HCU Network America is to help patients with HCU and related disorders manage their disease and to find a cure
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
Help us reach our goals and fulfill key patient needs by making a donation today!