Rare And Relentless

Rare And Relentless

Rare and Relentless is a platform dedicated to amplifying the voices of patients, parents, and advocates navigating the uncharted terrain of rare disease. Our mission is to expose systemic failures, challenge outdated policies, and fight for equitable care—relentlessly.

We believe that lived experience is expertise, that data and storytelling go hand-in-hand, and that no disease is too rare to matter. From policy breakdowns to personal breakthroughs, we are here to speak truth, demand change, and never stop pushing for the treatment, dignity, and justice every rare disease family deserves.

Join the advocacy movement!

A lit lightbulb hanging from the ceiling with black background. The text overlay reads: "CMS: Medical Nutrition is Not Optional" and "Cover it like the lifesaving therapy it is" by Gillian Sapia RN.
A black and white photo of a flower with text overlay discussing galactosemia and disability support, authored by Gillian Sapia RN.
A young girl in a hospital bed with an oxygen mask, connected to medical devices and wires, resting with closed eyes.
Black background with white text that says "THINK" inside a white square. Above, the text reads "#raredisease". Below, it says "OUTSIDE THE BOX" and "SAVE THE SYMPATHY—DELIVER THE SYSTEMS THAT WORK". The image is attributed to Gillian Sapia RN.