The National Organization for Rare Disorders, known as NORD, was named an official charity partner of the 2021 TCS New York City Marathon, which will be held Nov. 7 both in-person and online. “Supporting charitable causes and organizations are a long-standing tradition of the TCS New York City…
Inflammatory vaginitis — inflammation of the vagina — may develop in women receiving long-term treatment with rituximab for ANCA-associated vasculitis (AAV) or other autoimmune diseases, a U.S. study says. The findings suggest that “women treated with rituximab should be screened for symptoms such as vaginal discharge and vaginal pain,” its…
Humans are configured as social animals, regardless of personality type. We rely on each other, not only at a basic level for security, comfort, and good conversation, but also on a higher plane for things like artistic inspiration and love. The necessity of having “our people” around is never…
The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that offers resources and support for caregivers of children with rare diseases. “The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses” was designed…
Mycophenolate mofetil (MMF) is well-tolerated and can be used to induce remission in people with eosinophilic granulomatosis with polyangiitis (EGPA), a type of ANCA-associated vasculitis (AAV), a real-world study shows. Two-thirds of patients with newly diagnosed or relapsing EGPA achieved remission, or had no symptoms appearing for a time,…
Last weekend, a friend visited from another state. An enthusiastic cook who is curious by nature, he suggested we experiment with a new recipe. We decided to make Afghan ashak, which are leek-stuffed wonton dumplings with garlic yogurt and spicy tomato sauce, and topped with a garnish of cilantro and…
Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be livestreamed from California Sept. 27-29, and some seats also are available for attending the event in person in San Diego. “Here you’ll have the opportunity to connect and engage with others…
Registration is now open for the 2021 Rare Diseases and Orphan Products Breakthrough Summit, which will be held virtually Oct. 18–19. The event, also known as the National Organization for Rare Disorders (NORD) Summit, brings the rare disease community together to network and discuss developments in treatments and research…
Most people set an alarm to wake up. I’m fortunate — and grateful — that I’m not one of them. For several years, I’ve been self-employed in music and writing. This means I rarely need to be anywhere early in the morning. My music students don’t trickle in until after…
A novel index that computes five simple laboratory results at the time of diagnosis may improve predictions of all-cause mortality among patients with ANCA-associated vasculitis (AAV), a South Korean study reports. These lab results include the levels of immune neutrophils, lymphocytes, and monocytes, and of proteins C-reactive protein and…
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