HCU News & Events

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HCU Network America's, 2018 Taking the Lead for HCU Conference Report     and Conference Archive Website are now available to view.

Rome 2019 international patients expert meeting.

3rd International Homocystinuria Patient-Expert Meeting

HCU Network Australia will co-host the 3rd International Homocystinurias Patient - Expert Meeting bringing together leaders in the field of homocystinuria research, clinical care, nutrition and advocacy for a two (2) day conference in Rome, 2019. Details to follow.


Rome 2019 international patients expert meeting.
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Aeglea Press Release

AUSTIN, Texas, July 30, 2018 (GLOBE NEWSWIRE)

Aeglea BioTherapeutics to Present Preclinical Efficacy Data of AEB4104 - a New Enzyme Approach - for the treatment of Homocystinuria

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H & u a podcast about homocystinuria.

Homocystinuria Podcast Launched

HC&U: A Homocystinuria Podcast has officially Launched!
Available on Stitcher, iTunes and through their site.

H & u a podcast about homocystinuria.
Experience of diagnosis and patient satisfaction patient & caregiver survey.

HCU Network Australia - Patient Diagnosis Survey

There is currently limited evidence showing the considerable length of time taken in some cases to reach a diagnosis of homocystinuria and the level of patient satisfaction regarding access to information, treatment options and medical care.  This survey is important to highlight the current situation and has been prepared in consultation with a Key Opinion Leader (KOL) in Europe together with input from HCU Network America, to ensure the information gathered can be used globally to help support improved care for all homocystinuria patients.
We ask no matter what your experience, good or bad, you complete the survey
Experience of diagnosis and patient satisfaction patient & caregiver survey.
HCU Network America- Toolkit Cover

Classical HCU Toolkit Now Available

Check our new toolkit for Classical Homocystinuria!

Covers topics such as -
What is Homocystinuria?
Nutritional Guide
Tips & Tricks 
and more!

HCU Network America- Toolkit Cover
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Low Protein Food and Formula Reimbursement Support is Now Available

Part of our mission as HCU Network America is to increase access for treatments and supplements for    Homocystinuria patients. In order to fulfill this part of our mission, we have been in contact with Raenette Franco of Compassion Works Medical, LLC to help us fulfill this part of our goals.

A woman with long blonde hair is posing for a photo.

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) 966-3832


United States, Colorado
Children's Hospital Colorado
Aurora, Colorado, United States 80045

United States, Georgia
Emory University, School of Medicine Department of Human Genetics
Decatur, Georgia, United States 30033

United States, District of Columbia
The Children's National Medical Center (Institution)/span>
Washington, District of Columbia, United States, 20010

United States, Indiana
Indiana University School of Medicine
Indianapolis, Indiana, United States 46202

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

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More News & Events

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

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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 huu.

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


Patient Clinic Survey

A medical building with a cross on it.

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


Help us reach our goals and fulfill key patient needs by making a donation today!

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