Working Through the Question of Alternative Medicine

Among many health-support communities, there’s an ongoing discussion regarding pharmaceuticals versus natural healing. Once we patients have a diagnosis, the next step is to determine a treatment plan. But how do we know what’s the best route to keep our immune systems clean and functioning well, with the lowest…

A rare disease puts an economic burden on the patients, families, and caregivers that it affects, and will no doubt be an integral part of discussions on Rare Disease Day 2022, which brings international awareness about the more than 300 million people living with rare disorders. Part of that…

The nonprofit RARE-X is creating an easily-accessible, centralized data hub for all rare disease patient data that can help researchers answer questions about existing disorders, discover new ones, and work toward finding treatments. It was spun out of the work that Nicole Boice, founder and chief engagement officer of…

A molecule called sulfatide is found at low levels in people with ANCA-associated vasculitis (AAV), and may indicate the presence of inflammation and a form of kidney damage that is associated with poor outcomes, a pilot study reports. Thus, sulfatide levels may be a useful biomarker for AAV, a…

There’s an intriguing dichotomy in the vasculitis community, and I believe it’s one to be thankful for. My journey with granulomatosis with polyangiitis began in relative isolation. I was unfamiliar with the medical terms and treatments, and overwhelmed by the new normal that stood in front of me like…

It’s been nearly a year since the EveryLife Foundation for Rare Diseases released its expansive report finding the total economic burden of rare disorders in the U.S. to be nearly $1 trillion.

Note: This story was updated Feb. 22, 2022, to update the headline and clarify that some patients on rituximab do not mount an effective T-cell response to the COVID-19 vaccine. A significant proportion of patients on rituximab, including those with …

“Tell me about your disease.” This should be an uncomplicated request, but it’s not. Where do I start? What do I say that accurately encapsulates vasculitis but doesn’t confuse, mischaracterize, or bore? On the surface, describing my condition is simple: It’s an autoimmune disorder that causes inflamed blood vessels. But…

People with ANCA-associated vasculitis (AAV) want more disease-related information from their healthcare providers for better self-management, a study based on patient interviews reported. Patients said they needed better communication about symptoms, relapses, living with AAV, and mental health. This led researchers to call on healthcare professionals to…

Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends, and advocates from around the world to raise awareness and improve equity for the more than 7,000 known rare diseases that affect more than 300 million people. In 2022, the…