News

The American College of Rheumatology and the Vasculitis Foundation have published new guidelines to improve the treatment and management of systemic vasculitis, a group of inflammatory disorders that includes ANCA-associated vasculitis (AAV). The rarity of these disorders can make them challenging to diagnose and treat. The new…

AllianceRx Walgreens Prime, a specialty and home delivery pharmacy, is partnering with TailorMed, a healthcare technology company, to help lower out-of-pocket prescription costs for specialty pharmacy patients. Medications attained through specialty pharmacies are those used to treat rare and chronic conditions in the U.S., and are often extremely costly. For…

A blood parameter called large unstained cell count or LUC – which measures the numbers of certain activated immune cells – appears to associate with higher ANCA-associated vasculitis (AAV) disease activity, a small study found. These results, when combined with the findings of previous, larger-scale studies, show that “LUC…

Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work to make a difference for the global rare disease community. The deadline for nominations is Sept. 10…

ChemoCentryx has filed an amendment to its application seeking approval of avacopan, an investigational therapy for the treatment of ANCA-associated vasculitis (AAV). The filing addresses the issues raised by an advisory committee of independent medical experts during a recent meeting with the U.S. Food and Drug…

At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…

Using lower doses of prednisolone in combination with Rituxan (rituximab) resulted in similar rates of remission and fewer adverse events than Rituxan plus higher doses of the glucocorticoid in treating ANCA-associated vasculitis (AAV). Those were the findings of a Phase 4 clinical trial in Japan that examined the effects…

Creating ways to speed the process of getting an accurate diagnosis would help the health outcomes of patients with ANCA-associated vasculitis and other types of vasculitis, a study says. Delays in obtaining an accurate diagnosis are linked to unemployment, the need to travel long distances to a medical center,…

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…