Scleroderma is a rare autoimmune connective tissue disorder characterized by abnormal hardening of the skin and, sometimes, other organs. It is classified into two main forms: localized scleroderma an...
Comprehensive, easy-to-understand information about this condition
How we create this content →The limited documentation surrounding scleroderma is largely due to its rarity, affecting fewer than 5 in 10,000 people. This rarity has resulted in fewer systematic clinical studies, making it challenging to establish comprehensive clinical features and genetic factors. Ongoing research is essential to better understand the condition and improve patient outcomes.
To navigate your scleroderma journey, consider seeking a rheumatologist with expertise in autoimmune diseases, particularly those specializing in scleroderma. Connecting with patient organizations such as the National Scleroderma Foundation (https://scleroderma.org) and the Scleroderma Research Foundation (http://sclerodermaresearch.org) can provide valuable resources and support. Additionally, inquire about participation in patient registries or natural history studies to contribute to the understanding of this condition.
There are currently 240 active clinical trials investigating various aspects of scleroderma. While no orphan drugs have been designated for this condition, the extensive research activity provides hope for future treatment options. For more information on active trials, you can visit ClinicalTrials.gov and search for scleroderma: https://clinicaltrials.gov/search?cond=scleroderma.
Actionable guidance for navigating care for scleroderma
To navigate your scleroderma journey, consider seeking a rheumatologist with expertise in autoimmune diseases, particularly those specializing in scleroderma. Connecting with patient organizations such as the National Scleroderma Foundation (https://scleroderma.org) and the Scleroderma Research Foundation (http://sclerodermaresearch.org) can provide valuable resources and support. Additionally, inquire about participation in patient registries or natural history studies to contribute to the understanding of this condition.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the scleroderma community
Helpful links for rare disease information and support
The limited documentation surrounding scleroderma is largely due to its rarity, affecting fewer than 5 in 10,000 people. This rarity has resulted in fewer systematic clinical studies, making it challenging to establish comprehensive clinical features and genetic factors. Ongoing research is essential to better understand the condition and improve patient outcomes.
To navigate your scleroderma journey, consider seeking a rheumatologist with expertise in autoimmune diseases, particularly those specializing in scleroderma. Connecting with patient organizations such as the National Scleroderma Foundation (https://scleroderma.org) and the Scleroderma Research Foundation (http://sclerodermaresearch.org) can provide valuable resources and support. Additionally, inquire about participation in patient registries or natural history studies to contribute to the understanding of this condition.
There are currently 240 active clinical trials investigating various aspects of scleroderma. While no orphan drugs have been designated for this condition, the extensive research activity provides hope for future treatment options. For more information on active trials, you can visit ClinicalTrials.gov and search for scleroderma: https://clinicaltrials.gov/search?cond=scleroderma.
Actionable guidance for navigating care for scleroderma
To navigate your scleroderma journey, consider seeking a rheumatologist with expertise in autoimmune diseases, particularly those specializing in scleroderma. Connecting with patient organizations such as the National Scleroderma Foundation (https://scleroderma.org) and the Scleroderma Research Foundation (http://sclerodermaresearch.org) can provide valuable resources and support. Additionally, inquire about participation in patient registries or natural history studies to contribute to the understanding of this condition.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the scleroderma community
Helpful links for rare disease information and support
The limited documentation surrounding scleroderma is largely due to its rarity, affecting fewer than 5 in 10,000 people. This rarity has resulted in fewer systematic clinical studies, making it challenging to establish comprehensive clinical features and genetic factors. Ongoing research is essential to better understand the condition and improve patient outcomes.
To navigate your scleroderma journey, consider seeking a rheumatologist with expertise in autoimmune diseases, particularly those specializing in scleroderma. Connecting with patient organizations such as the National Scleroderma Foundation (https://scleroderma.org) and the Scleroderma Research Foundation (http://sclerodermaresearch.org) can provide valuable resources and support. Additionally, inquire about participation in patient registries or natural history studies to contribute to the understanding of this condition.
There are currently 240 active clinical trials investigating various aspects of scleroderma. While no orphan drugs have been designated for this condition, the extensive research activity provides hope for future treatment options. For more information on active trials, you can visit ClinicalTrials.gov and search for scleroderma: https://clinicaltrials.gov/search?cond=scleroderma.
Actionable guidance for navigating care for scleroderma
To navigate your scleroderma journey, consider seeking a rheumatologist with expertise in autoimmune diseases, particularly those specializing in scleroderma. Connecting with patient organizations such as the National Scleroderma Foundation (https://scleroderma.org) and the Scleroderma Research Foundation (http://sclerodermaresearch.org) can provide valuable resources and support. Additionally, inquire about participation in patient registries or natural history studies to contribute to the understanding of this condition.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the scleroderma community
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 Feb 8, 2026
Patient Advocacy Groups (PAGs) provide support, resources, and community for patients and caregivers.
Consider asking your healthcare providers these condition-specific questions
European rare disease database
Genetic and Rare Diseases Info Center
1 peer-reviewed source from PubMed
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 — 2 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.