News

Retrophin and the U.S. subsidiary of Britain’s Horizon Pharma will each donate $3 million over a six-year period to the Rare Disease Institute (RDI) at Children’s National Health System in Washington, D.C., helping it to strengthen care available and expand as a “center of excellence” for rare…

In recognition of Rare Disease Day 2018, Bionews Services — which publishes this website — will attend and report on three relevant conferences in the U.S. dealing with policies and programs of importance to patients and their families. The three are among 50 events in 32 states…

A combination treatment with Rituxan (rituximab), low-dose cyclophosphamide (Cytoxan), and tapered corticosteroids induces significant disease remission and reduces risk of relapse in patients with ANCA-associated vasculitis (AAV) with renal symptoms, U.K. researchers found. The study, “Long-term follow-up of a combined rituximab and cyclophosphamide regimen in…

Diagnosing ANCA-associated vasculitis in children and adolescents can pose difficulties for doctors, given its rarity and varied clinical course, researchers say. In a new study, investigators described the case of a teenager with MPO-positive vasculitis and severe pulmonary and renal symptoms, who went without a diagnosis for about four years. The…

A rock-painting contest in Las Vegas. A fashion show in New York. A 7,000-meter race around the Washington Monument that’ll coincide with a similar #Racefor7 event in Bengaluru and Mumbai, India. From Athens to Atlanta, from San Diego to Sydney, people across the globe will mark World Rare Disease…

Low daily doses of oral prednisone — 2.5 mg/day or less — during long-term remission maintenance therapy was associated with a higher rate of relapse in patients with antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV) in Japan, a study reports. The study, “Risk Factors for Relapse of Antineutrophil Cytoplasmic Antibody-associated Vasculitis in…

An increase in the production of ANCA antibodies may sometimes be associated with Sweet’s syndrome, a rare condition characterized by painful skin lesions, a case report shows. The study, “Sweet’s Syndrome Mimicking ANCA-Associated Vasculitis,” was published in The American Journal of Medicine. Sweet’s syndrome, also known…

A shorter glucocorticoid treatment course, given in combination with Rituxan (rituximab), may be beneficial for some patients with ANCA-associated vasculitis, a study shows. The study, “Reducing glucocorticoid duration in ANCA-associated vasculitis: A pilot trial,” was published in the journal Seminars in Arthritis and Rheumatism. While modern…

Some blood vessel inflammation cases stem from a group of diseases collectively known as ANCA-associated vasculitis, while others don’t. Chinese scientists have discovered a first: a non-ANCA-associated vasculitis case that turned into an ANCA-associated one. Doctors call an ANCA-associated case an ANCA-positive case, and a non-associated case an ANCA-negative case. At…

David Curtis Glebe, a retired 64-year-old public prosecutor now living in Millsboro, Delaware, knows he’s lucky to be alive. In mid-2013, while in Arizona, Glebe was diagnosed with pancreatic neuroendocrine cancer (PNET) — the same disease that killed Apple’s founder and CEO Steve Jobs. After three years of progress…