Any autosomal dominant polycystic kidney disease in which the cause of the disease is a mutation in the ALG9 gene.
Comprehensive, easy-to-understand information about this condition
How we create this content →The documentation for ALG9-associated autosomal dominant polycystic kidney disease is limited due to its rarity and the lack of systematic clinical studies. Because this condition affects a small number of individuals, comprehensive data collection and characterization of clinical features have been challenging. Ongoing research is essential to better understand this condition and improve patient outcomes.
To navigate your care for ALG9-associated autosomal dominant polycystic kidney disease, consider seeking a nephrologist with expertise in genetic kidney disorders. It may also be beneficial to connect with genetic counselors who can provide guidance on genetic testing and family planning. Although no patient organizations are currently identified, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can offer valuable information. Additionally, inquire about any available patient registries or natural history studies that may provide further insights into the condition.
Currently, there are several orphan drugs designated for ALG9-associated autosomal dominant polycystic kidney disease, including tolvaptan and other investigational therapies such as lixivaptan and bardoxolone methyl. While no clinical trials are available at this time, the presence of these designated drugs indicates ongoing research efforts. For updates on potential clinical trials, you can search ClinicalTrials.gov for relevant studies.
Actionable guidance for navigating care for ALG9-associated autosomal dominant polycystic kidney disease
To navigate your care for ALG9-associated autosomal dominant polycystic kidney disease, consider seeking a nephrologist with expertise in genetic kidney disorders. It may also be beneficial to connect with genetic counselors who can provide guidance on genetic testing and family planning. Although no patient organizations are currently identified, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can offer valuable information. Additionally, inquire about any available patient registries or natural history studies that may provide further insights into the condition.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation for ALG9-associated autosomal dominant polycystic kidney disease is limited due to its rarity and the lack of systematic clinical studies. Because this condition affects a small number of individuals, comprehensive data collection and characterization of clinical features have been challenging. Ongoing research is essential to better understand this condition and improve patient outcomes.
To navigate your care for ALG9-associated autosomal dominant polycystic kidney disease, consider seeking a nephrologist with expertise in genetic kidney disorders. It may also be beneficial to connect with genetic counselors who can provide guidance on genetic testing and family planning. Although no patient organizations are currently identified, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can offer valuable information. Additionally, inquire about any available patient registries or natural history studies that may provide further insights into the condition.
Currently, there are several orphan drugs designated for ALG9-associated autosomal dominant polycystic kidney disease, including tolvaptan and other investigational therapies such as lixivaptan and bardoxolone methyl. While no clinical trials are available at this time, the presence of these designated drugs indicates ongoing research efforts. For updates on potential clinical trials, you can search ClinicalTrials.gov for relevant studies.
Actionable guidance for navigating care for ALG9-associated autosomal dominant polycystic kidney disease
To navigate your care for ALG9-associated autosomal dominant polycystic kidney disease, consider seeking a nephrologist with expertise in genetic kidney disorders. It may also be beneficial to connect with genetic counselors who can provide guidance on genetic testing and family planning. Although no patient organizations are currently identified, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can offer valuable information. Additionally, inquire about any available patient registries or natural history studies that may provide further insights into the condition.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation for ALG9-associated autosomal dominant polycystic kidney disease is limited due to its rarity and the lack of systematic clinical studies. Because this condition affects a small number of individuals, comprehensive data collection and characterization of clinical features have been challenging. Ongoing research is essential to better understand this condition and improve patient outcomes.
To navigate your care for ALG9-associated autosomal dominant polycystic kidney disease, consider seeking a nephrologist with expertise in genetic kidney disorders. It may also be beneficial to connect with genetic counselors who can provide guidance on genetic testing and family planning. Although no patient organizations are currently identified, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can offer valuable information. Additionally, inquire about any available patient registries or natural history studies that may provide further insights into the condition.
Currently, there are several orphan drugs designated for ALG9-associated autosomal dominant polycystic kidney disease, including tolvaptan and other investigational therapies such as lixivaptan and bardoxolone methyl. While no clinical trials are available at this time, the presence of these designated drugs indicates ongoing research efforts. For updates on potential clinical trials, you can search ClinicalTrials.gov for relevant studies.
Actionable guidance for navigating care for ALG9-associated autosomal dominant polycystic kidney disease
To navigate your care for ALG9-associated autosomal dominant polycystic kidney disease, consider seeking a nephrologist with expertise in genetic kidney disorders. It may also be beneficial to connect with genetic counselors who can provide guidance on genetic testing and family planning. Although no patient organizations are currently identified, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can offer valuable information. Additionally, inquire about any available patient registries or natural history studies that may provide further insights into the condition.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
Clinical profile data for this condition is not yet available. Phenotype information may still be loading below.
Consider asking your healthcare providers these condition-specific questions
AI-Generated Content: This summary was generated using AI. Content has been fact-checked. Always consult with qualified healthcare providers for medical guidance.
Organizations with approved therapies for this disease
No approved therapies yet
Research is ongoing — 5 companies have orphan drug designations for this disease
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.
AI-curated news mentioning ALG9-associated autosomal dominant polycystic kidney disease
Updated Feb 16, 2026
A case report highlights recurrent obturator hernia in a patient with autosomal dominant polycystic kidney disease undergoing peritoneal dialysis. This study contributes to the understanding of complications associated with this genetic condition.