We often think of cyclic vomiting syndrome (CVS) as a rare disease, but is this really the truth? According to a recent article from New Castle News, this is not…
In the past, there has never been an approved therapeutic option for those with acid sphingomyelinase deficiency (ASMD). This meant that there was a huge unmet need within this patient…
Roger Bliss, 68-year-old pulmonary hypertension (PH) patient, was diagnosed with chronic lymphocytic leukemia and small lymphocytic lymphoma. In addition, Roger has celiac disease. He recently interviewed with Pulmonary Hypertension News.…
For the first time, a team of researchers measured heart rate variability (HRV) in those with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to understand how the autonomic nervous system (ANS) responded…
On March 24, 2022, the Rare Disease Legislative Advocates hosted its monthly webinar to provide updates on legislation and public policy that is relevant to the rare disease patient community.…
A recent article discusses the various relationships between osteoporosis, osteonecrosis, and bisphosphonate medications. Osteoporosis (Paget’s Disease) Osteoporosis causes bones to become weak and brittle — so brittle that a fall…
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