by CheckRare Staff | Sep 3, 2025
Survey Finds Wide-Ranging Impact of X-Linked Hypophosphatemia (XLH) on Patient Experiences Findings highlight the burden of XLH on personal finances and out-of-pocket costs, overall health—physical, mental, and social—and access to expert care. XLH Community...
by CheckRare Staff | Aug 20, 2025
Eva Morava-Kozicz, MD, PhD, Mayo Clinic in Rochester, MN shares some tips for a rare disease group to be part of the Rare Diseases Clinical Research Network (RDCRN), which is funded by the National Institutes of Health (NIH) and led by the National Center for...
by CheckRare Staff | Aug 15, 2025
Pamela Blair Allen, MD, MSc, Hematologist, discusses the new CTCL Staging Tool on PROBEinCTCL.com. Cutaneous T-cell Lymphomas (CTCL) are rare, heterogeneous types of non-Hodgkin T-cell lymphoma that primarily manifest in the skin but can involve other...
by CheckRare Staff | Jul 19, 2025
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). CML is a myeloproliferative neoplasm characterized by the expression...
by CheckRare Staff | Jul 17, 2025
Researchers from Berlin, Germany and Beirut, Lebanon have confirmed in a prospective, observational study that patients with uncontrolled symptoms of indolent systemic mastocytosis (ISM) can improve disease control and their quality of life with the use of...
