A chronic disorder, possibly autoimmune, marked by excessive production of collagen which results in hardening and thickening of body tissues. The two types of systemic scleroderma, limited cutaneous ...
Comprehensive, easy-to-understand information about this condition
How we create this content →The documentation surrounding systemic sclerosis is limited due to its rarity, affecting approximately 1-5 in 10,000 individuals. This low prevalence results in fewer systematic clinical studies, which hampers comprehensive understanding and characterization of the disease. Additionally, the complex nature of the condition, with variable expressivity and overlapping symptoms with other disorders, makes it challenging to gather consistent clinical data.
To navigate systemic sclerosis effectively, consider consulting with a rheumatologist who specializes in autoimmune diseases, particularly those with experience in scleroderma. It may also be beneficial to look into clinical trials that could provide access to new therapies. For resources, the National Organization for Rare Disorders (NORD) offers valuable information at rarediseases.org. While no specific patient organizations are identified, participating in clinical trials may provide additional support and information. Keep an eye out for any patient registries or natural history studies that may become available.
There are several orphan drugs designated for systemic sclerosis, including tocilizumab, which is FDA-approved. Additionally, there are multiple drugs currently in development. A total of 244 active clinical trials are ongoing, exploring various treatment options and interventions for systemic sclerosis. You can find more information about these trials at ClinicalTrials.gov by searching for systemic sclerosis: https://clinicaltrials.gov/search?cond=systemic%20sclerosis.
Actionable guidance for navigating care for systemic sclerosis
To navigate systemic sclerosis effectively, consider consulting with a rheumatologist who specializes in autoimmune diseases, particularly those with experience in scleroderma. It may also be beneficial to look into clinical trials that could provide access to new therapies. For resources, the National Organization for Rare Disorders (NORD) offers valuable information at rarediseases.org. While no specific patient organizations are identified, participating in clinical trials may provide additional support and information. Keep an eye out for any patient registries or natural history studies that may become available.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation surrounding systemic sclerosis is limited due to its rarity, affecting approximately 1-5 in 10,000 individuals. This low prevalence results in fewer systematic clinical studies, which hampers comprehensive understanding and characterization of the disease. Additionally, the complex nature of the condition, with variable expressivity and overlapping symptoms with other disorders, makes it challenging to gather consistent clinical data.
To navigate systemic sclerosis effectively, consider consulting with a rheumatologist who specializes in autoimmune diseases, particularly those with experience in scleroderma. It may also be beneficial to look into clinical trials that could provide access to new therapies. For resources, the National Organization for Rare Disorders (NORD) offers valuable information at rarediseases.org. While no specific patient organizations are identified, participating in clinical trials may provide additional support and information. Keep an eye out for any patient registries or natural history studies that may become available.
There are several orphan drugs designated for systemic sclerosis, including tocilizumab, which is FDA-approved. Additionally, there are multiple drugs currently in development. A total of 244 active clinical trials are ongoing, exploring various treatment options and interventions for systemic sclerosis. You can find more information about these trials at ClinicalTrials.gov by searching for systemic sclerosis: https://clinicaltrials.gov/search?cond=systemic%20sclerosis.
Actionable guidance for navigating care for systemic sclerosis
To navigate systemic sclerosis effectively, consider consulting with a rheumatologist who specializes in autoimmune diseases, particularly those with experience in scleroderma. It may also be beneficial to look into clinical trials that could provide access to new therapies. For resources, the National Organization for Rare Disorders (NORD) offers valuable information at rarediseases.org. While no specific patient organizations are identified, participating in clinical trials may provide additional support and information. Keep an eye out for any patient registries or natural history studies that may become available.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation surrounding systemic sclerosis is limited due to its rarity, affecting approximately 1-5 in 10,000 individuals. This low prevalence results in fewer systematic clinical studies, which hampers comprehensive understanding and characterization of the disease. Additionally, the complex nature of the condition, with variable expressivity and overlapping symptoms with other disorders, makes it challenging to gather consistent clinical data.
To navigate systemic sclerosis effectively, consider consulting with a rheumatologist who specializes in autoimmune diseases, particularly those with experience in scleroderma. It may also be beneficial to look into clinical trials that could provide access to new therapies. For resources, the National Organization for Rare Disorders (NORD) offers valuable information at rarediseases.org. While no specific patient organizations are identified, participating in clinical trials may provide additional support and information. Keep an eye out for any patient registries or natural history studies that may become available.
There are several orphan drugs designated for systemic sclerosis, including tocilizumab, which is FDA-approved. Additionally, there are multiple drugs currently in development. A total of 244 active clinical trials are ongoing, exploring various treatment options and interventions for systemic sclerosis. You can find more information about these trials at ClinicalTrials.gov by searching for systemic sclerosis: https://clinicaltrials.gov/search?cond=systemic%20sclerosis.
Actionable guidance for navigating care for systemic sclerosis
To navigate systemic sclerosis effectively, consider consulting with a rheumatologist who specializes in autoimmune diseases, particularly those with experience in scleroderma. It may also be beneficial to look into clinical trials that could provide access to new therapies. For resources, the National Organization for Rare Disorders (NORD) offers valuable information at rarediseases.org. While no specific patient organizations are identified, participating in clinical trials may provide additional support and information. Keep an eye out for any patient registries or natural history studies that may become available.
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 30, 2026
Consider asking your healthcare providers these condition-specific questions
European rare disease database
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
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 systemic sclerosis
Updated Feb 9, 2026
Recent research indicates that targeting the PD-1 pathway may reduce inflammation and fibrosis in systemic sclerosis. This discovery could lead to new therapeutic strategies for managing this challenging condition.
A recent retrospective cohort study investigates the impact of hydroxychloroquine on mortality and cardiovascular outcomes in systemic sclerosis. The findings contribute to understanding treatment efficacy in this rare disease.