A genetic, non-inheritable disorder caused by osteoblastic differentiation defects that result in the replacement of bone marrow and trabecular bone by fibrous stroma and immature bone. It usually aff...
Comprehensive, easy-to-understand information about this condition
How we create this content →Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Feb 8, 2026
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Feb 8, 2026
Documentation on fibrous dysplasia is limited due to its rarity and the lack of established genetic markers. As the condition affects fewer than 1 in 100,000 individuals, comprehensive clinical studies are scarce. The complexity of its symptoms and the variability in how it presents further complicate the understanding of this disorder. Ongoing research aims to better characterize the condition and explore potential therapeutic options.
Patients with fibrous dysplasia often present with a range of clinical features. The most common symptom is fibrous dysplasia of the bones, which is always present. Other frequent manifestations include abnormalities of the limbs (80-99%), axial skeleton morphology (80-99%), and skull morphology (80-99%). Osteolysis and abnormal bone structure are also prevalent in 80-99% of cases, while bowing of long bones and patchy reduction of bone mineral density are noted in 30-79% of patients.
To navigate fibrous dysplasia, consider consulting with an orthopedic specialist with experience in bone disorders. The FD/MAS Alliance provides resources and support for patients and families affected by fibrous dysplasia. You can also explore opportunities for participation in clinical trials and natural history studies through ClinicalTrials.gov. For additional support, the National Organization for Rare Disorders (NORD) offers resources at rarediseases.org.
Currently, there are six active clinical trials investigating various aspects of fibrous dysplasia. While there are no orphan drug designations, these trials may provide insights into potential treatments and management strategies. For more information on these trials, you can visit ClinicalTrials.gov and search for fibrous dysplasia: https://clinicaltrials.gov/search?cond=fibrous%20dysplasia.
Actionable guidance for navigating care for fibrous dysplasia
To navigate fibrous dysplasia, consider consulting with an orthopedic specialist with experience in bone disorders. The FD/MAS Alliance provides resources and support for patients and families affected by fibrous dysplasia. You can also explore opportunities for participation in clinical trials and natural history studies through ClinicalTrials.gov. For additional support, the National Organization for Rare Disorders (NORD) offers resources at rarediseases.org.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the fibrous dysplasia 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
AI-Generated Content: This summary was generated using AI. Content has been fact-checked. Always consult with qualified healthcare providers for medical guidance.
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