Verified information about diagnostics and treatment, experienced doctors, and research updates - in one place, in Polish and English.
Photo from polymerase chain reaction training at the University of Gdańsk.
After histopathology suspicious for FD, a GNAS genetic test confirms the diagnosis. Without it, FD can be confused with other bone lesions - including tumors.
Source: PMC6968989
Leading centers (Leiden, Sapienza, UCSF) recommend observation until skeletal maturity if there's no pain or functional impairment. Consult an expert.
Sources: PubMed 38010041 · PMC6968989
We're building a database of doctors in Poland and Europe who have treated FD/MAS patients. Plus current clinical guidelines - to download and bring to your doctor.
Doctors and guidelines →Iterative AI–researcher collaboration platform for rare disease research. Open-source. CLI MVP: June 2026.
AI monitors new publications, clinicians approve guideline changes. Continuously updated, version-controlled clinical knowledge.
The foundation has been operating since December 2025. Key milestones from the first months - in short, with dates.
Leiden UMC - Director of the International FD/MAS Consortium, ERN BOND reference center.
Sapienza University, Rome - world-class expert in FD histopathology.
UCSF Bone Biology, USA - research program on targeted therapies for FD, FD/MAS Alliance Scientific Advisory Board.
Open-access consensus by 51 experts from 13 countries (Javaid, Boyce, Appelman-Dijkstra, …, Collins). Orphanet Journal of Rare Diseases, 14(139). Download it and bring it to your doctor.
Patient-facing page with flowcharts: FD/MAS Alliance.