Who are we?
The idea of the International Consortium for Fibrous Dysplasia and the McCune Albright Syndrome (ICFDMAS) emerged at a multidisciplinary workshop attended by FD/MAS patients, doctors and clinical researchers in Oxford, England 2015. A consensus was reached to create an international, multi-stakeholder partnership to advance research and clinical care in FD/MAS. The consortium has been meeting every 1-2 years since with meetings in Lyon (2016), Leiden (2017) and Florence (2019) and Silver Spring (2023).
Mission of the Consortium:
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To improve the care and find solutions for the unmet needsof patients and their care providers through the promotion of multi-stakeholder, collaborative, and patient-centricclinical, translational, and basic research.
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To encourage testing and development of potential cures and treatments and promote the development of evidence-based standards of care.
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Aims to improve access to information worldwide through dissemination and education initiatives.
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The consortium will support the development of cooperative scientific studies and initiatives with promise to serve the global FD/MAS patient community.
