We are excited to share our academically agreed-upon International Care Guidelines. This was a multi-year, multi-center project that researchers, clinicians, patient advocates, and many reviewers worldwide worked very hard to develop and publish. We expect this publication will continue to evolve as time to diagnosis and diagnostic capabilities are improving. Information is power. Our foundation would like to dedicate this publication to Dr. Charis Eng. Her legacy lives on. We would also like to thank Claudio Ales, President of PTEN Italia, who was also integral in advising us on this international collaboration.

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