Better Awareness, Specialist Access May Help Cut Time to Diagnosis

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,…

Summer mornings in my house are deliciously slow. Around 8 a.m., the dogs know our first task is to go outside and tend to the plants. I fill a watering can and make the rounds: vegetables, herb garden, succulents on the porch, and tea plants on the patio. The better…

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,…

Treatment with ChemoCentryx’s investigational therapy avacopan can improve kidney function in people with ANCA-associated vasculitis to a greater extent than steroids, especially among individuals with advanced kidney disease, clinical trial data show. The data were presented at the annual meeting of the European Renal Association –…

I wish I could go back in time and tell my middle-school self that one day, math would be a positive thing. Algebra, trigonometry, and even physics felt alien to me. No matter how I tried, my brain did not function in a way that allowed me to conceptualize anything…

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,…

Vasculitis UK has awarded a total of £200,000 (about $283,000) in four grants to research projects mostly focused on the development of new therapeutic approaches and biomarkers for ANCA-associated vasculitis (AAV) and other vasculitis. All grants, each about £50,000 (about $70,800), were given to researchers at academic institutions…

Receiving a chronic illness diagnosis can be frustrating and full of apparent dichotomies. After years of searching for answers, a diagnosis is a welcome end, but it also signals a beginning.  The doctors pronounced my disease to be granulomatosis with polyangiitis (called Wegener’s granulomatosis when I first…

Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in Europe living with rare diseases are left behind by the start of a new decade. As part of…