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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

All individual donations up to a total of $20,000 made between October - December 31 will be matched by our anonymous donor!
Start planning your Homocystinuria Fundraiser now!
Have a fundraiser planned? Email us and we will help spread the word.
Need help? Email us - we will guide you through the process.

Register for the Fall 2017 Community Call!

Come see what we have been up to and what we have planned.

Get a sneak peek at what is on the agenda for the 2018 Homocystinuria Conference!

Montanta State University Press Release

MSU Doctoral Student seeking a cure for her son's rare disorder wins fellowship

Bozeman, Montana. July 1, 2017 - MSU News Service

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

Locations:

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

 

More News & Events

For more news and events, please visit our News & Events page

Ways to Get Involved!

Medical Nutrition Equity Act

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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.

Click here to Take Action Now!

Helping Hands for HCU:

A collaborative effort of patients, clinics &

HCU Network America

Helping hands for HCU

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

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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.

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!