Belimumab Granted Orphan Drug Designation for Systemic Sclerosis
A case of systemic sclerosis. Source: Nevit Dilmen / CC BY-SA (https://creativecommons.org/licenses/by-sa/3.0)

Belimumab Granted Orphan Drug Designation for Systemic Sclerosis

Initially, belimumab (sold under the brand name BENLYSTA) was approved for the treatment of patients for lupus and lupus nephritis. It was the first FDA-approved biologic treatment within this indication.…

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“We May Bend, But Never Break”: How the Chandler Family Faces a Tuberous Sclerosis Complex (TSC) Diagnosis with Resilience

Gavin Chandler loves toy cars, watching Big City Greens, fans, the “Baby Shark” song, and anything that lights up or makes noise—including, his mother Jessica shares, the vacuum cleaner. He…

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Learning to Live with Spontaneous Periodic Hypothermia: Lachlan’s Story (Pt. 1)
Photo courtesy of Mark, Donna, and Lachlan Lasikiewicz

Learning to Live with Spontaneous Periodic Hypothermia: Lachlan’s Story (Pt. 1)

When Lachlan Lasikiewicz turned gray one day, his lips a frightening blue, his grandma and aunt didn’t panic. They simply wrapped him up in a blanket and held him close,…

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Writing the Book: How Nicole’s Journey Continues to Raise ALPS Awareness (Pt. 2)
Photo courtesy of Laura Martone-Roublick

Writing the Book: How Nicole’s Journey Continues to Raise ALPS Awareness (Pt. 2)

Before you read, don't forget to check out Part 1 of our interview with Laura, Nicole's mom. In Part 1, we discuss Nicole's diagnostic journey, what acute lymphoproliferative syndrome (ALPS) is,…

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