The following was written by Jill DiStefano, Olivia’s mom. Olivia was the 4th person diagnosed with NLRC4 macrophage activation-like syndrome (NLRC4-MAS), a type of periodic fever syndrome. This is Olivia’s story and how we came to find out about her … Continue reading
In honor of May being National Arthritis Awareness Month, we are focusing this blog post on a rare autoinflammatory arthritis, systemic-onset juvenile idiopathic arthritis (SJIA), which is also referred to as Still’s disease. We have invited Becky Milne, whose 13-year-old … Continue reading
Every year, the last day of February is Rare Disease Day. Most years, this day lands on February 28th, and in rare years like 2016, February 29th marks Rare Disease Day. We encourage everyone who is affected by a rare … Continue reading