A variant of systemic scleroderma characterized by sclerosis of the skin, Raynaud phenomenon, and organ involvement, including pulmonary fibrosis, renal disease, and gastrointestinal tract involvement...
Comprehensive, easy-to-understand information about this condition
How we create this content →The documentation for diffuse scleroderma is limited due to its rarity and the complexity of its clinical features. As it affects fewer individuals, systematic clinical studies have been sparse, leading to gaps in understanding its genetic basis and phenotypic manifestations. This can understandably lead to frustration for patients seeking more information and support.
To navigate your care effectively, consider seeking a rheumatologist with specific expertise in scleroderma. They can provide tailored management strategies for your condition. Additionally, while there are currently no identified patient organizations, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can be valuable for information and support. Participating in clinical trials may also offer access to new therapies and contribute to the understanding of diffuse scleroderma.
Currently, there are three orphan drugs designated for the treatment of diffuse scleroderma: inebilizumab, Sitaxentan (also known as sitaxsentan), and Type 1 native bovine skin collagen. Additionally, there are 230 active clinical trials exploring various treatment options and management strategies for this condition. For more details on ongoing trials, you can search at ClinicalTrials.gov using this link: https://clinicaltrials.gov/search?cond=diffuse%20scleroderma.
Actionable guidance for navigating care for diffuse scleroderma
To navigate your care effectively, consider seeking a rheumatologist with specific expertise in scleroderma. They can provide tailored management strategies for your condition. Additionally, while there are currently no identified patient organizations, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can be valuable for information and support. Participating in clinical trials may also offer access to new therapies and contribute to the understanding of diffuse scleroderma.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation for diffuse scleroderma is limited due to its rarity and the complexity of its clinical features. As it affects fewer individuals, systematic clinical studies have been sparse, leading to gaps in understanding its genetic basis and phenotypic manifestations. This can understandably lead to frustration for patients seeking more information and support.
To navigate your care effectively, consider seeking a rheumatologist with specific expertise in scleroderma. They can provide tailored management strategies for your condition. Additionally, while there are currently no identified patient organizations, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can be valuable for information and support. Participating in clinical trials may also offer access to new therapies and contribute to the understanding of diffuse scleroderma.
Currently, there are three orphan drugs designated for the treatment of diffuse scleroderma: inebilizumab, Sitaxentan (also known as sitaxsentan), and Type 1 native bovine skin collagen. Additionally, there are 230 active clinical trials exploring various treatment options and management strategies for this condition. For more details on ongoing trials, you can search at ClinicalTrials.gov using this link: https://clinicaltrials.gov/search?cond=diffuse%20scleroderma.
Actionable guidance for navigating care for diffuse scleroderma
To navigate your care effectively, consider seeking a rheumatologist with specific expertise in scleroderma. They can provide tailored management strategies for your condition. Additionally, while there are currently no identified patient organizations, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can be valuable for information and support. Participating in clinical trials may also offer access to new therapies and contribute to the understanding of diffuse scleroderma.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation for diffuse scleroderma is limited due to its rarity and the complexity of its clinical features. As it affects fewer individuals, systematic clinical studies have been sparse, leading to gaps in understanding its genetic basis and phenotypic manifestations. This can understandably lead to frustration for patients seeking more information and support.
To navigate your care effectively, consider seeking a rheumatologist with specific expertise in scleroderma. They can provide tailored management strategies for your condition. Additionally, while there are currently no identified patient organizations, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can be valuable for information and support. Participating in clinical trials may also offer access to new therapies and contribute to the understanding of diffuse scleroderma.
Currently, there are three orphan drugs designated for the treatment of diffuse scleroderma: inebilizumab, Sitaxentan (also known as sitaxsentan), and Type 1 native bovine skin collagen. Additionally, there are 230 active clinical trials exploring various treatment options and management strategies for this condition. For more details on ongoing trials, you can search at ClinicalTrials.gov using this link: https://clinicaltrials.gov/search?cond=diffuse%20scleroderma.
Actionable guidance for navigating care for diffuse scleroderma
To navigate your care effectively, consider seeking a rheumatologist with specific expertise in scleroderma. They can provide tailored management strategies for your condition. Additionally, while there are currently no identified patient organizations, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can be valuable for information and support. Participating in clinical trials may also offer access to new therapies and contribute to the understanding of diffuse scleroderma.
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.
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
Genetic and Rare Diseases Info Center
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 — 1 company has 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.