Making it easier for patients living with rare diseases to find the right specialist 25 March 2026 By Alicia Cowley, MD, MBA

https://rarerevolutionmagazine.com/making-it-easier-for-patients-living-with-rare-diseases-to-find-the-right-specialist/ For people living with rare diseases, the longest and most difficult delays often happen before treatment ever begins. Rare disease journeys are rarely linear. Patients and caregivers may spend years navigating uncertainty, misdiagnosis and fragmented care before they ever reach the right clinician. Research suggests that, on average, it can take five or more years1 to receive an accurate rare disease diagnosis, during which time they may see six physicians2 or more. Along the way, misdiagnosis and fragmented care are well documented, often contributing to worse outcomes and eroding trust in the healthcare system.

American Glaucoma Society (AGS) 2026 Annual Meeting

https://www.medscape.com/c25/p14/american-glaucoma-society-ags-2026-annual-meeting-2026a10003dx?ecd=wnl_conf_ophth_american-glaucoma-society-non-spon_260324_mscpedit_etid8208873&uac=148436CN&impID=8208873

Initial testing for an adult presenting with possible Cushing syndrome (Medscape AI)

https://www.medscape.com/ai-search?query=Initial%20testing%20for%20an%20adult%20presenting%20with%20possible%20Cushing%20syndrome&ecd=wnl_tp10_daily_260325_MSCPEDIT_etid8214312&uac=148436CN&impID=8214312

How to interpret Lp(a) in a patient with no known cardiovascular disease? (Medscape AI)

https://www.medscape.com/ai-search?query=How%20to%20interpret%20Lp%28a%29%20in%20a%20patient%20with%20no%20known%20cardiovascular%20disease%3F&ecd=wnl_tp10_daily_260324_MSCPEDIT_etid8211506&uac=148436CN&impID=8211506

Delaying Pegfilgrastim May Curb Bone Pain in Breast Cancer Frederik Joelving March 25, 2026

https://www.medscape.com/viewarticle/delaying-pegfilgrastim-may-curb-bone-pain-breast-cancer-2026a100092f

Targeting HRD and BRCA: The Expanding Role of PARP Inhibitors in Ovarian Cancer Treatment by CheckRare Staff| Published on: Feb 20, 2026

https://checkrare.com/parp-inhibitors-in-ovarian-cancer-treatment/

RARE DISEASE LEARNING CENTERS +++

RARE DISEASE LEARNING CENTERS Neuroblastoma https://checkrare.com/neuroblastoma/ Neuroblastoma is a rare childhood cancer, but it is the most common extracranial solid tumor in children. It is a neuroendocrine tumor that originates in neuroblasts or neural crest progenitor cells. It often appears initially in the adrenal glands, but tumors can be found virtually anywhere in the sympathetic nervous system. Cutaneous T-Cell Lymphoma https://checkrare.com/cutaneous-t-cell-lymphoma-2/ Cutaneous T-cell lymphoma (CTCL) belongs to the non-Hodgkin lymphoma class of hematologic T-cell lymphoproliferative disorders. Cutaneous T-cell lymphoma is a rare group of malignancies, with an incidence of 6.4 cases per 1 million people. This form of T-cell lymphoma represents around 70% of primary cutaneous lymphomas. Tenosynovial Giant Cell Tumor (TGCT) https://checkrare.com/tenosynovial-giant-cell-tumor-tgct/ Tenosynovial giant cell tumor (TGCT) is a non-malignant tumor involving the joint synovium, bursae, and tendon sheath. These rare tumors are sometimes referred to as giant cell tumor of the tendon sheath (GCT-TS) and/or pigmented villonodular synovitis (PVNS).