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The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit organizations and research programs to help people with rare diseases.  “The RareLaunch program is…

A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…

People with ANCA-associated vasculitis (AAV) have a similar incidence of COVID-19 as the general population, but the ongoing pandemic has significantly disrupted routine medical care for patients with this autoimmune disease, a study found. Some AAV patients had therapies postponed or had healthcare visits rescheduled; 16% had less…

Having persistently or recurrently high levels of ANCA antibodies is associated with a greater risk of relapse in people with ANCA-associated vasculitis (AAV), a recent study has found. In patients whose ANCA antibodies target the myeloperoxidase (MPO) protein, a recurrent ANCA pattern was also significantly associated with…

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series of surveys found. The surveys were conducted by the National Organization for Rare Disorders (NORD) and involved more than 800…

People with kidney inflammation due to ANCA-associated vasculitis (AAV) have a high incidence of venous thromboembolism or VTE, a potentially dangerous type of blood clot, a new study shows. However, treatment with statins — cholesterol-lowering medications — may significantly reduce patients’ VTE risk, researchers say. The…

A group of proteins that modulate immune responses, called heat shock proteins (HSPs), are significantly elevated in the kidneys of people with ANCA-associated vasculitis (AAV), and their levels are associated with poorer kidney function and organ survival, a multi-year study found.  These…

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, including amyotrophic lateral sclerosis (ALS). The organization’s panel of judges has pared the number of contest submissions…

Adding plasma exchange to immune-suppressing treatment does not significantly improve clinical outcomes in people with ANCA-associated vasculitis (AAV), a new meta-analysis indicates. The analysis, “The role of plasma exchange in antineutrophil cytoplasmic antibody-associated vasculitis: a meta-analysis,” was published in Clinical Rheumatology. AAV is characterized by…

High blood levels of FCRL5 — a protein mainly found in certain B-cells, a type of immune cell — are linked with a greater likelihood of achieving and maintaining a complete response to rituximab in people with granulomatosis with polyangiitis (GPA) and microscopic polyangiitis (MPA),…