The Nagging Questions of Chronic Illness

It sometimes feels silly when I receive an invitation for an event happening more than a year in the future. This is because the details of my everyday life can be so overwhelming it’s all I can do to focus on the here and now. Maybe I’ll focus on next…

A retrospective study by the National Institutes of Health (NIH) suggests that healthcare costs for those with rare diseases have been underestimated, possibly being three to five times higher than for those without rare diseases. This study provides evidence of the potential effect rare diseases may have on public health…

A woman of childbearing years developed ANCA-associated vasculitis (AAV) after taking the thyroid medication methimazole to treat her Graves’ disease, a case report shows. The patient experienced signs of respiratory and kidney failure secondary to AAV, but her symptoms improved after discontinuing the medication and starting immunosuppressive medications. Four…

The topic of stress is much too familiar to autoimmune disease patients. Even in remission, I’m not immune to the overwhelming feeling that comes when my cortisol levels spike. I’m not a physician or a researcher, and plenty of studies about the science behind stress are available to…

In their continued efforts to improve health equity for people with rare diseases, Global Genes and RARE-X have joined forces to help advocacy groups collect patient data and make the most of that information. “Patient data is perhaps the most valuable asset rare disease communities can leverage to…

Tavneos (avacopan), a recently approved add-on oral therapy for severe, active ANCA-associated vasculitis (AAV), will be distributed in the U.S. by PANTHERx, the country’s leading rare disease pharmacy. The announcement follows an agreement with ChemoCentryx, Tavneos’ developer, which selected the pharmacy as a limited distribution partner. “PANTHERx is proud…

I’ve been writing my column, “Peaceful Chaos,” about living with granulomatosis with polyangiitis (GPA) since June. I’ve written about my medications, doctor appointments, and the daily struggles of being chronically ill. I’ve discussed the psychological effect this disease has had on me and on others, and what…

Global Genes has partnered with the Rare Disease Diversity Coalition (RDDC) to advance health equity for rare disease patients and caregivers in underrepresented communities of color. “For rare disease patients, there are many challenges — and for people of color with a rare disease, these challenges are compounded…

The Rare Disease Diversity Coalition (RDDC) awarded $600,000 in grants to ease the disparities faced by rare disease patients of color. These Impact Rare Disease Solution grants will go five RDDC steering committee working groups, which aim to identify problems for rare disease communities and advocate for solutions. The five…

People are social creatures who thrive when nurtured, and when our achievements — such as weddings, graduations, promotions, and new babies — are celebrated. But when challenges arise, a supportive foundation can prove even more valuable. After I was diagnosed with granulomatosis…