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Helping Hands for HCU:

A collaborative effort of patients, clinics & HCU Network America

Helping hands for HCU

HCU News

Community Call: Spring 2017

Watch our recording of our Spring 2017 community call to find out what has been going on and what exciting things the HCU community has to look forward too!

Hamad Medical Corporation Press Release

HMC holds family day to create awareness to Homocystinuria.

April 30, 2017. Doha, Qatar

HealthWell Foundation Press Release

HealthWell Foundation fund offers financial assistance to people living with Homocystinuria.

April, 19, 2017 -Preswire

 

Recordati Press Release

Recordati Rare Diseases Inc. acquires North American marketing rights to Cystadane (Betaine Anhydrous for Oral Solution)

Lebanon, N.J. April 13, 2017 - PRNewswire

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

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!