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Urea Cycle Disorders
Urea Cycle Disorders:
Argininemia
Argininosuccinic aciduria (ASA)
Citrullinemia
Given that these conditions require life-long treatment from infancy through adulthood, we hope to work with you locally to support awareness, research and promote collaboration with national affiliate organizations when feasible. Please use the following links to receive more information about the Illinois Newborn Screening Program and Affiliate Metabolic Organizations.
Illinois Department of Public Health (IDPH) Website
The following link you to the IDPH Newborn Screening Fact Sheets for Each Disorder
Argininemia
Argininosuccinic aciduria (ASA)
Citrullinemia
Support Groups
The National Urea Cycle Disorders Foundation (NUCDF)
75 South Grand Avenue
Pasadena, California 91105
Phone: (626)578-0833
Toll-Free: (800)38-NUCDF (386-8233)
Fax: (626)578-0823
Email: info@nucdf.org
Website: www.nucdf.org
Additional Resources
Connecting Families Urea Cycle Disorder Foundation – An organization that hosts national family meetups and camps specifically for UCD.
NORD’s Urea Cycle Disorders (UCD) Patient Assistance Programs – Offer eligible individuals diagnosed with UCD financial support when faced with limited resources to pay for out-of-pocket healthcare costs, diagnostic testing costs, purchase of medical foods & supplements and/or unexpected emergency expenses. Link here.
Invitae’s UCD Genetic Testing Program – Provides access to genetic testing for people suspected of having a urea cycle disorder (UCD), and their family members, at no charge. Website link here.
Horizon Therapeutics offers a website for UCD families that offers loads of educational resources.