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LGS is a rare neurodevelopmental disorder that evolves over time in very young children from treatment-resistant seizures.

The EB Research Partnership is the largest global organization dedicated to funding research to treat and cure Epidermolysis Bullosa or EB.

Primary HLH is a rare, rapidly progressive, and fatal disorder with a median survival of less than 2 months.

iMCD is the deadliest subtype of Castleman disease. Approximately one third of patients die within five years of diagnosis, and another third die within 10 years if not treated.

There are no effective treatment options for people with unresectable or metastatic chondrosarcoma despite many attempts by multiple pharmaceutical companies over the past few decades.

We're going Behind the Mystery of two rare diseases: Castleman disease and chondrosarcoma.

Systemic Mastocytosis (SM) is characterized by the overactivity and build-up of mast cells throughout the body. Learn more now.

NRG1 fusions, a rare cancer target, may unlock new potential options for doctors and patients.

Wilson disease is a rare, chronic disorder characterized by copper accumulation in organs and tissues that, if left untreated, may result in liver, neurologic, and psychiatric symptoms that progress over time. To understand more about how this disease affects patients, we met with Ed, who waited over 50 years for a diagnosis. He details the […]