Meet the International Consortium for FD/MAS
February 20th at 11:00 EST on Facebook live (even if you don’t have Facebook)
The international Consortium for FD/MAS (ICFDMAS) will officially launch on 20th of February, 2022. The group has met informally since 2015 as a group of researchers, clinicians, and patient advocates from around the world. Over the course of these meetings, a consensus was reached to create an international, multi-stakeholder partnership to advance research and clinical care in FD/MAS.
Hear from Dr. Natasha Appelman-Dijkstra (Director of the Center for Bone Quality at Leiden University Medical Center, The Netherlands) and Adrienne McBride (FD/MAS Alliance Executive Director), two key board members for the ICFDMAS. Bring your questions about international collaboration and the work to advance FD/MAS research.
Fibrous dysplasia and McCune-Albright syndrome (FD|MAS) is a rare disease that can cause a wide range of issues. It is genetic, but it is not inherited from family and cannot be passed down. It can be traced to a single random mutation that occurs in the womb as a fetus develops. Symptoms range from mild to severe, and people living with FD|MAS can live full and prosperous lives. There is no cure, however, and there are no treatments to stop or slow a major symptom of the disease, the growth of malformed bones. These malformed bones cause chronic pain, weak bones that are easy to fracture, and differently-shaped bodies. Patients turn to a range of stopgap treatments, like multiple surgeries, hormonal therapeutics, and medical device implants to try and manage their disease.
The mission of the International Consortium for FD/MAS is to improve the care and find solutions for the unmet needs of patients and their carers through the promotion of multi-stakeholder, collaborative, and patient-centric clinical, translational, and basic research. The International Consortium for FD/MAS will encourage the testing and development of potential cures and treatments. Also it will promote the development of evidence-based standards of care. The consortium aims to improve access to information worldwide through dissemination and education initiatives. Finally the consortium will support the development of cooperative scientific studies and initiatives with promise to serve the global FD/MAS patient community.