Blog
A Second Chance at Life: Belinda Patlidanovski’s Vasculitis Journey
- egpa
- Eosinophilic Granulomatosis with Polyangiitis
A Second Chance at Life: Belinda Patlidanovski’s Vasculitis Journey Belinda is from Sydney, Australia, and describes herself as a positive person who loves to travel, have fun, and be “the calm to anyone’s storm—except my own (ha-ha).” Just a few years ago, her life looked very different. What began as sinus issues and asthma would […]
Important Information for the Vasculitis Community Regarding TAVNEOS® (avacopan)
- official statement
- Uncategorized
Official Statement Important Information for the Vasculitis Community Regarding TAVNEOS® (avacopan) Updated Drug Safety Communication March 31, 2026 On Tuesday, March 31, 2026, the FDA released a drug safety communication regarding Tavneos. FDA Identifies Cases of Serious Liver Injury in Patients Taking Tavneos (avacopan) for Severe Active Anti-neutrophil Cytoplasmic Autoantibody (ANCA)-associated Vasculitis What is the […]
Healing Is Not a Straight Line: Vlasta’s Journey Through Reconstruction and Recovery
- GPA, Granulomatosis with polyangiitis
- Granulomatosis with Polyangiitis
Healing Is Not a Straight Line: Vlasta Racki’s Journey Through Reconstruction and Recovery Since her story was first published (Blooming Through Resilience: A Story of Life with Vasculitis – Vasculitis Foundation), Vlasta says the biggest change hasn’t only been physical—it’s been how she understands healing. Early in her diagnosis, she often felt like she was […]
Nancy Kilbourn’s Story: Finding Answers and Living with Vasculitis
- microscopic polyangiitis, MPA
- Microscopic Polyangiitis
Nancy Kilbourn’s Story: Finding Answers and Living with Vasculitis At 73 years old, Nancy was so exhausted that walking across a room felt overwhelming. She had begun using a cane, was driving less, and slowly withdrawing from activities she once loved. For years she had been searching for answers. Doctor visits and tests kept coming […]
A Second Chance in Life: Ranae Goleman’s Journey with Vasculitis
- Anca Associated Vasculitis, Takayasu Arteritis
- ANCA vasculitis, Takayasu Arteritis
A Second Chance in Life: Ranae Goleman’s Journey with Vasculitis At 35 years old, Ranae lives in Verdigris, Oklahoma, with her husband, Drake, of 14 years. Known for her optimistic outlook and desire to bring joy to others, she says the meaning of her name—“born again”—has taken on deeper significance after everything she has endured. […]
From Advocacy to Impact: Policy Strategies to Accelerate Rare Disease Cures
- Uncategorized
From Advocacy to Impact: Policy Strategies to Accelerate Rare Disease Cures On February 19, the Vasculitis Foundation hosted a virtual rare disease policy briefing that brought together leaders from patient advocacy organizations, research institutions, and congressional offices. The discussion focused on a critical question for the rare disease community: how can policy help accelerate the development of treatments […]