Happy Weekend Before the Election Patient Worthians! Get some rest, Tuesday is going to be a big one in the United States. But while you're hanging out, check out these…
According to a study published in Pediatric Rheumatology, treatment with anakinra early in the neonatal period (birth-28 days) was shown to be effective in treating CINCA (Chronic Infantile Neurological Cutaneous…
Do you live in the United States? Are you an adult? (Meaning, are you older than 18? Whether or not you have your life together does not apply to this…
Patient Worthy had the privilege of speaking with Vicky, who shared her story of being diagnosed and living with sarcoidosis. My case was outside the ‘normal’ perimeters because I was…
Last night as part of my boyfriend’s birthday gift, we attended a St. Paul Saints’ baseball game in downtown St. Paul, Minnesota. Anyone who knows me even a little bit…
Chiasma is conducting another clinical trial for Acromegaly patients, the MPOWERED study. “It is designed to compare the safety and effectiveness of an investigational new drug product, octreotide capsules, to…
Happy Father's Day Week Patient Worthians! We hope you celebrated your rare dads this week-- because they deserve it. As you know, it's Myasthenia Gravis Awareness Month so we are highlighting some new drug…
There's good news for people living with carnitine palmitoyltransferase (CPT) deficiency and their caregivers! Ultragenyx recently released data from an open-label study of the treatment triheptanoin. In the study, five infants…
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