Successful Consortium meeting in Madrid

Saturday 25 October 2025

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We are delighted to report that our biennial Consortium Meeting took place in Madrid, Spain, from 24-26 October 2025 and proved to be a dynamic and highly successful gathering of the global FD/MAS community. The meeting was graciously hosted by the Spanish patient and clinical-community via the Asociación Española de Displasia Fibrosa (Spanish Association of Fibrous Dysplasia) and the local organising team in Madrid. 

Highlights of the meeting

  • The programme brought together clinicians, researchers, patients and family-members from around the world to share the latest advances in Fibrous Dysplasia (FD) / McCune‑Albright Syndrome (MAS).

  • A standout session was delivered by Natasha Appelman‑Dijkstra (Leiden University Medical Center) on the recently submitted 3 clinical guideline papers for FD/MAS — a major milestone for our community with a patient guide to follow. 

  • The importance of registries was emphasised by Kassim Javaid (University of Oxford), who provided an update on the RUDY study, and by Sophie Huisman (Leiden University Medical Center) who discussed the European Registries for Rare Endocrine & Bone (EuRREB) initiative.

  • The clinical implications and progress of the phase 2 study of Burosumab in FD/MAS  (led by Alison Boyce, NIH) sparked considerable interest and intense discussion among clinicians and patients.

  • Basic and translational science sessions were rich and wide-ranging: among others, Biagio Palmisano (Sapienza University of Rome) presented on FD/MAS mouse models, and Anne‑Marie Heegaard (University of Copenhagen) reported advances in modelling pain in FD. These sessions provoked lively discussions and underscored the healthy interaction between bench and bedside. 

  • On Sunday, 26 October, the patient focussed  programme began with a dedicated clinical session chaired by Dr Lucía Ugarriza. Highlights included a presentation on FD care in children, pre-recorded by dr Alison Boyce, followed by Dr Irene Tarjuelo García (Hospital Universitario Sanitas La Moraleja) on endocrine care in children and Dr Michael Collins  on adult endocrine management. Later, sessions on orthopaedic and trauma management brought in Dr Ana María Bueno Sánchez (Hospital Universitario de Getafe), Dr Robert Stanton and Dr Jasone Malone (Nemours Children’s Hospital), Dr Lothar Seefried (University of Würzburg) on adult management, Dr Sarina Pichardo (UMC Groningen) on maxillofacial considerations, and Dr Stijn Van der Meeren (Leiden University Medical Center) on ophthalmology. The afternoon included deep-dives iand presentations from Dr Pere Antoni Borrás Rotger (Universitat Illes Balears) on physical activity in FD and Dr Manuel Parrón (Hospital Universitario La Paz) on imaging strategy, before the closing discussion and meeting wrap-up.

What comes next

  • A summary of meeting outcomes  and next-steps will be circulated to all members and participants in the coming weeks.

  • Participants are encouraged to continue the momentum: join the registry work-streams  and translational-clinical research projects initiated in Madrid.

  • Our website will soon host photo-galleries, slide-decks (where permitted) and summary materials from the meeting.

Thank you

A heartfelt thank you goes to the Asociación Española de Displasia Fibrosa and the local organising committee in Madrid, all speakers, presenters, patient-family participants, sponsors and volunteers who made this meeting a reality. Your contributions made ICFDMAS 2025 a true success. We also thank everyone who travelled to Madrid.

For further information, questions or access to slides/posters, please contact: info@icfdmas.com.

We look forward to continuing our joint efforts and to the next chapter in advancing FD/MAS research, care and community.

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