A day in the life: reconciling grief and gratitude 17 December 2025 Written by Amy Gietzen +++

https://rarerevolutionmagazine.com/a-day-in-the-life-reconciling-grief-and-gratitude/ Amy Gietzen invites us into her life with scleroderma, revealing the messy reality of a rare, chronic illness. She shares how she's learned that grief for her former self and gratitude for her present purpose can coexist, using her experience in advocacy to foster empathy in future healthcare students. Read this moving piece on resilience, the balancing act of daily life, and the strength found in carrying both grief and gratitude. Written by Amy Gietzen My journey with congenital erythropoietic porphyria (CEP) and the light I found through art 14 October 2025 https://rarerevolutionmagazine.com/my-journey-with-congenital-erythropoietic-porphyria-cep-and-the-light-i-found-through-art/ WHAT HAS BEEN YOUR STANDOUT MOMENT THIS YEAR? “The launch of our new title, RARE Revolution insider®. I am immensely proud of what the team has created with this new membership content. From content curation and writing quality to layout. It further cements our mission to ensure we are doing all we can to elevate rare disease as a priority topic of conversation.” https://editions.rarerevolutionmagazine.com/html5/reader/production/default.aspx?pubname=&edid=61553d05-0d27-4f70-9db3-615793924b92&pnum=12 WHAT HAS BEEN YOUR STANDOUT MOMENT THIS YEAR? “Two, please, if I may? The standouts for me have been seeing the reach and impact of our work this year. Our incredible analytics only tell us part of the picture. What really stands out is every email of feedback that the team and I receive as a result of our digital and magazine content. Our impact doesn’t end with readers and metrics—it starts there. It’s the onward connections, collaborations and access to support that spring from each of our articles that truly mean the most to us. Of course, I can’t end 2025 without mentioning the launch of our new RARE Revolution insider® title and Cognito AI librarian tool. Not only am I incredibly proud of the innovation that this launch represents and the hard work and ingenuity of the whole team and external partners, but also of the immensely high-quality content we are delivering. I am excited to see what 2026 brings for our new fledgling.”