An instance of focal segmental glomerulosclerosis that is caused by an inherited genomic modification in an individual.
Comprehensive, easy-to-understand information about this condition
How we create this content →The documentation for inherited focal segmental glomerulosclerosis is limited due to the rarity of the condition, which affects fewer than a few thousand people worldwide. This rarity restricts the number of systematic clinical studies and comprehensive phenotype documentation. Additionally, the genetic basis has only recently been identified, and ongoing research is necessary to fully characterize the clinical features associated with this disorder.
To navigate your care effectively, seek a nephrologist with expertise in genetic kidney disorders, particularly those familiar with focal segmental glomerulosclerosis. You may also consider contacting genetic counseling services to discuss the implications of genetic testing for you and your family. For further resources, visit the Genetic and Rare Diseases Information Center at rarediseases.info.nih.gov, which offers valuable information on rare conditions and available support. Participating in clinical trials may also provide access to cutting-edge treatments and contribute to the understanding of this condition.
There are currently four orphan drugs in development for inherited focal segmental glomerulosclerosis, including 4-Chloro-N-[5-methyl-2-(7H-pyrrolo[2,3-d]pyrimidin-4-ylcarbonyl)-3-pyridinyl]-3-(trifluoromethyl)benzenesulfonamide, sodium salt, propagermanium, and irbesartan, sparsentan. Additionally, there are five active clinical trials investigating various aspects of this condition. You can explore these trials further at ClinicalTrials.gov using the following link: https://clinicaltrials.gov/search?cond=inherited%20focal%20segmental%20glomerulosclerosis.
Actionable guidance for navigating care for inherited focal segmental glomerulosclerosis
To navigate your care effectively, seek a nephrologist with expertise in genetic kidney disorders, particularly those familiar with focal segmental glomerulosclerosis. You may also consider contacting genetic counseling services to discuss the implications of genetic testing for you and your family. For further resources, visit the Genetic and Rare Diseases Information Center at rarediseases.info.nih.gov, which offers valuable information on rare conditions and available support. Participating in clinical trials may also provide access to cutting-edge treatments and contribute to the understanding of this condition.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation for inherited focal segmental glomerulosclerosis is limited due to the rarity of the condition, which affects fewer than a few thousand people worldwide. This rarity restricts the number of systematic clinical studies and comprehensive phenotype documentation. Additionally, the genetic basis has only recently been identified, and ongoing research is necessary to fully characterize the clinical features associated with this disorder.
To navigate your care effectively, seek a nephrologist with expertise in genetic kidney disorders, particularly those familiar with focal segmental glomerulosclerosis. You may also consider contacting genetic counseling services to discuss the implications of genetic testing for you and your family. For further resources, visit the Genetic and Rare Diseases Information Center at rarediseases.info.nih.gov, which offers valuable information on rare conditions and available support. Participating in clinical trials may also provide access to cutting-edge treatments and contribute to the understanding of this condition.
There are currently four orphan drugs in development for inherited focal segmental glomerulosclerosis, including 4-Chloro-N-[5-methyl-2-(7H-pyrrolo[2,3-d]pyrimidin-4-ylcarbonyl)-3-pyridinyl]-3-(trifluoromethyl)benzenesulfonamide, sodium salt, propagermanium, and irbesartan, sparsentan. Additionally, there are five active clinical trials investigating various aspects of this condition. You can explore these trials further at ClinicalTrials.gov using the following link: https://clinicaltrials.gov/search?cond=inherited%20focal%20segmental%20glomerulosclerosis.
Actionable guidance for navigating care for inherited focal segmental glomerulosclerosis
To navigate your care effectively, seek a nephrologist with expertise in genetic kidney disorders, particularly those familiar with focal segmental glomerulosclerosis. You may also consider contacting genetic counseling services to discuss the implications of genetic testing for you and your family. For further resources, visit the Genetic and Rare Diseases Information Center at rarediseases.info.nih.gov, which offers valuable information on rare conditions and available support. Participating in clinical trials may also provide access to cutting-edge treatments and contribute to the understanding of this condition.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation for inherited focal segmental glomerulosclerosis is limited due to the rarity of the condition, which affects fewer than a few thousand people worldwide. This rarity restricts the number of systematic clinical studies and comprehensive phenotype documentation. Additionally, the genetic basis has only recently been identified, and ongoing research is necessary to fully characterize the clinical features associated with this disorder.
To navigate your care effectively, seek a nephrologist with expertise in genetic kidney disorders, particularly those familiar with focal segmental glomerulosclerosis. You may also consider contacting genetic counseling services to discuss the implications of genetic testing for you and your family. For further resources, visit the Genetic and Rare Diseases Information Center at rarediseases.info.nih.gov, which offers valuable information on rare conditions and available support. Participating in clinical trials may also provide access to cutting-edge treatments and contribute to the understanding of this condition.
There are currently four orphan drugs in development for inherited focal segmental glomerulosclerosis, including 4-Chloro-N-[5-methyl-2-(7H-pyrrolo[2,3-d]pyrimidin-4-ylcarbonyl)-3-pyridinyl]-3-(trifluoromethyl)benzenesulfonamide, sodium salt, propagermanium, and irbesartan, sparsentan. Additionally, there are five active clinical trials investigating various aspects of this condition. You can explore these trials further at ClinicalTrials.gov using the following link: https://clinicaltrials.gov/search?cond=inherited%20focal%20segmental%20glomerulosclerosis.
Actionable guidance for navigating care for inherited focal segmental glomerulosclerosis
To navigate your care effectively, seek a nephrologist with expertise in genetic kidney disorders, particularly those familiar with focal segmental glomerulosclerosis. You may also consider contacting genetic counseling services to discuss the implications of genetic testing for you and your family. For further resources, visit the Genetic and Rare Diseases Information Center at rarediseases.info.nih.gov, which offers valuable information on rare conditions and available support. Participating in clinical trials may also provide access to cutting-edge treatments and contribute to the understanding of this condition.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Jan 31, 2026
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.
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.