Hypothyroidism, a condition in which the thyroid gland does not produce enough hormones, is not more likely to occur in people with one ANCA-associated vasculitis (AAV) subtype than the others, a study found. But the thyroid disease is associated with the presence of perinuclear ANCA (p-ANCA) antibodies or ANCAs…
Vasculitis UK is urging patients with such autoimmune disorders to complete an online research survey that is seeking to generate a better understanding of the extent and severity of nerve problems in people with vasculitis. The “Survey of disability and neuropathy/nerve problems in vasculitis” was launched by Robert…
“Veni, vidi, vici” is translated from Latin as “I came, I saw, I conquered.” Julius Caesar first said this after a victorious battle. Having a rare illness is a battle every day. I battle to stay alive. I battle to live a fulfilling life. I battle to get out of…
A survey is seeking people with ANCA-associated vasculitis (AAV) around the world to help researchers better understand how patients make decisions about treatment. Called OPTIONS Vasculitis, the survey is collecting responses from people with AAV, including granulomatosis with polyangiitis and microscopic polyangiitis, as…
I reached a milestone in November. Half my life ago, I was diagnosed with granulomatosis with polyangiitis (GPA). On Nov. 16, 2001, I was near death when I was admitted to the emergency room. Nineteen years later, here I am. Each of those years has been a bonus in…
To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…
Genetic variations in the TERT and DSP genes, previously associated with an increased risk of idiopathic pulmonary fibrosis (IPF), are also tied to a greater likelihood of ANCA-associated vasculitis (AAV), a study in Japan found. However, these gene variants are not associated with a risk of interstitial lung…
The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to a survey conducted by Eurordis-Rare Diseases Europe. “People living with rare diseases in Europe have found themselves caught as collateral…
Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about how their respective organizations came to be, as well as the benefits of creating patient registries and how they can help…
Changes in autoantibodies that target the protein PR3 in people with ANCA-associated vasculitis (AAV) may help predict sustained remission following treatment, and eventual disease relapses, a study found. The research also shows that the ALBIA method, which is becoming widely…
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