Argininemia

Organizations

Are there good support groups for argininemia?

Support groups are organizations that provide support, information, advice, referrals to physicians and medical centers, and up-to-date information on research and treatments. The National Urea Cycle Disorders Foundation is a nonprofit organization dedicated to the identification, treatment and cure of urea cycle disorders.

There are also organizations that provide support and information for metabolic disorders like argininemia as a group. These organizations are called umbrella organizations. They represent many different metabolic disorders including the urea cycle disorders and include Children Living with Inherited Metabolic Diseases and the European Registry and Network for Intoxication Type Metabolic Diseases (E-IMD).

SOURCE: Emory University - Department of Human Genetics in collaboration with ThinkGenetic • https://www.thinkgenetic.com/diseases/argininemia/organizations/36505 • DATE UPDATED: 2019-06-17

References

Arginase Deficiency. The National Organization for Rare Disorders website. https://rarediseases.org/rare-diseases/arginase-deficiency

Wong D, Cederbaum S, Crombez EA. Arginase Deficiency. GeneReviews website. https://www.ncbi.nlm.nih.gov/books/NBK1159

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