Argininosuccinic aciduria
Organizations
Are there good support groups for argininosuccinic aciduria?
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 like argininosuccinic aciduria.
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).
References
- Argininosuccinic Aciduria. The National Organization for Rare Disorders website. Accessed July 1, 2017. https://rarediseases.org/rare-diseases/argininosuccinic-aciduria
- Nagamani SCS, Erez A, Lee B. Argininosuccinate Lyase Deficiency. GeneReviews website. Accessed July 1, 2017. https://www.ncbi.nlm.nih.gov/books/NBK51784
More Organizations Content
Where do I find other people with argininosuccinic aciduria?
Where do I find other people with argininosuccinic aciduria?
Support groups are organizations that provide support, information, advice, referrals to physicians and medical centers, and up-to-date information on research and treatments. Support groups for argininosuccinic aciduria include the National Urea Cycle Disorders Foundation. This organization represents all urea cycle disorders.
There are also online communities for rare disorders such as RareConnect, RareShare, or Inspire, which allow individuals and parents to share experiences and advice about dealing with rare disorders.
References
- Argininosuccinic Aciduria. The National Organization for Rare Disorders website. Accessed July 1, 2017. https://rarediseases.org/rare-diseases/argininosuccinic-aciduria
- Nagamani SCS, Erez A, Lee B. Argininosuccinate Lyase Deficiency. GeneReviews website. Accessed July 1, 2017. https://www.ncbi.nlm.nih.gov/books/NBK51784
