Golin Health is proud to share “The Raising Rare Report,” which examines the needs of young people living with rare diseases and their caregivers, during their pivotal transition to independence and adulthood. Approximately 1 in 10 people in the U.S. are living with a rare disease and the journey typically begins in childhood. Today, thanks to advances in science, young patients are living longer fuller lives, but as they grow, they must learn to manage their own healthcare, pursue education, careers, and maintain relationships—all while navigating systems that aren’t designed with their unique challenges in mind.  

This report is the synthesis of research that was conducted with caregivers and young people from the rare disease community at this critical stage in their lives. Launched in recognition of Rare Disease Day 2025, this novel research draws on firsthand insights from both groups and uncovers key gaps between what each group wants and expects, how they experience this pivotal life stage, and where healthcare communications has the opportunity to address these unmet needs.  

The “Raising Rare Report” is not just a snapshot of where we are, but a starting point for how we move forward, serving as a crucial tool for pharmaceutical and healthcare companies navigating the evolving rare disease space.