Rare Disease News, Insight, and Clinical Perspective ++++++

FEATURED ARTICLES Survey Finds Wide-Ranging Impact of X-Linked Hypophosphatemia (XLH) on Patient Experiences https://checkrare.com/survey-finds-wide-ranging-impact-of-x-linked-hypophosphatemia-on-patient-experiences/ Al Freedman, PhD, Rare Disease Psychologist and Rare Dad, and Jill H. Simmons, MD, Endocrinologist at Vanderbilt University Medical Center in Nashville, Tennessee discuss the XLH Community Impact Survey and mental health in rare diseases. New Staging Tool Available for Healthcare Providers Treating Patients With CTCL https://checkrare.com/new-staging-tool-available-for-healthcare-providers-treating-patients-with-ctcl/ Pamela Blair Allen, MD, MSc, Hematologist, discusses the new CTCL Staging Tool on PROBEinCTCL.com. Cutaneous T-Cell Lymphoma: Natural History and the Need for Better Diagnostic and Treatment Efficacy https://checkrare.com/cutaneous-t-cell-lymphoma-natural-history-and-the-need-for-better-diagnostic-and-treatment-efficacy/ Henry Wong, MD, PhD, Dermatologist at the San Diego Veterans Hospital and the University of California San Diego (UCSD), discusses cutaneous T-cell lymphoma (CTCL). Chronic Myeloid Leukemia: Diagnosis and Treatment https://checkrare.com/chronic-myeloid-leukemia-diagnosis-and-treatment/ Michael Mauro, MD, Director of the Chronic Myeloid Leukemia Program at Memorial Sloan Kettering Cancer Center, discusses the diagnosis and treatment of chronic myeloid leukemia (CML). Cutaneous T-Cell Lymphoma: Overview, Management, and Quality-of-Life https://checkrare.com/cutaneous-t-cell-lymphoma-overview-management-and-quality-of-life/ Neha Mehta-Shah, MD, Medical Oncologist at Washington University St. Louis, provides an overview of cutaneous T-cell lymphoma (CTCL), discusses management options, and addresses quality-of-life concerns. A New Test for Patient-Reporting of Mastocytosis Control https://checkrare.com/a-new-test-for-patient-reporting-of-mastocytosis-control/ A team of allergists, immunologists, and dermatologists sought to test a new patient-reported outcomes measure for assessing mastocytosis disease control. Their newly developed tool, called the Mastocytosis Control Test (MCT), was generated through interviews with adult patients with nonadvanced indolent systemic mastocytosis.