The “Raising Rare Report” Uncovered Disconnect Between Patient and Caregiver Expectations, Offering Roadmap for Communications
CHICAGO (July 28, 2025) – New research from Golin Health has revealed significant gaps in communication and expectations between caregivers and young adults living with rare diseases as they transition to healthcare independence. The “Raising Rare Report,” launched in recognition of Rare Disease Day 2025, provides critical insights for marketers and communicators working to better support this vulnerable population during a pivotal life stage.
A striking finding is the gap between a patient’s perception of their independence readiness and the perception of their readiness among caregivers. While nearly 100% of caregivers worry their loved one’s rare disease impacts their ability to plan for the future and 79% fear they aren’t equipped for health independence, more than three out of four patients (79%) who achieved independence felt prepared for the transition.
The study also found that most patients (77%) intend to change their treatment plans after gaining independence, whereas 53% of caregivers expect treatment plans to remain the same, suggesting a significant communication gap about future healthcare decisions.
“Thanks to remarkable advances in medicine, more patients with rare diseases are reaching adulthood than ever before,” says Jaimee Reggio, Managing Director, US Healthcare, Golin Health. “Through our extensive work supporting companies investing in rare disease treatments, we recognized that this critical transition period was understudied and poorly understood. This research reveals an opportunity to bridge these gaps with communications that support patients, caregivers, and healthcare providers during this pivotal time.”
The study revealed that patients and caregivers are preparing for healthcare independence in fundamentally different ways:
- Caregivers prioritize practical preparation: 74% focus on everyday disease management skills, and 71% emphasize understanding treatment plans.
- In contrast, patients are seeking connection and mental health support: 74% want guidance from healthcare providers, and 57% seek mental health resources and peer conversations with other patients.
The research uncovered a stark disconnect in treatment decision-making responsibilities:
- While 67% of caregivers report being the sole decision-makers for all treatment decisions, 51% of patients believe their care is mutually managed.
- This imbalance is taking a significant toll: 73% of caregivers report an emotional impact from their caregiving role, and 74% feel overwhelmed balancing everyday life with health responsibilities.
Healthcare Providers: The Trusted Source for Both Groups
Despite seeking information from different sources day-to-day, both patients and caregivers identify healthcare providers as their primary trusted source for specific disease and treatment information (79% of patients, 87% of caregivers).
Both groups are eager for more in-depth conversations with their care teams, with 70% of caregivers and 74% of patients wanting more guidance. They’re specifically seeking help to understand long-term treatment plans, measure treatment success, and assess how current plans support their individual care priorities.
Research Methodology
The “Raising Rare Report” was conducted as a U.S.-only survey launched on Rare Disease Day, February 28, 2025. The study focused on levels of preparedness for managing independent healthcare and the types of support needed during the transition to adulthood. A total of 261 patients aged 16 to 23 years and 120 caregivers aged 25 to 55 years participated in the study, which was fielded from April 2025 to June 2025. The research examined 175 rare diseases.
The full “Raising Rare Report” is available at Golin.com. For more information about Golin Health’s capabilities in rare disease communications, contact Jaimee Reggio at JReggio@golin.com.
About Golin Health
Golin Health is a global public relations agency working to bring health within reach for more people. Our science-focused, creatively driven teams craft effective solutions for healthcare brands through a range of specialties to reach key audiences and drive business impact for our clients. By centering patients and data-driven strategies in all that we do, Golin Health has developed a deep understanding of the rare disease landscape and how to create meaningful change through health communications. The agency was recognized as PRWeek’s 2023 and 2024 Healthcare Outstanding Agency Practice.
About Golin
Golin is a global public relations agency that helps companies create change that matters. Together, we discover powerful human truths that bind us, create with bravery, and collaborate inclusively and obsessively. Golin’s 1700 global employees operate across 50+ offices worldwide, allowing us to provide our clients with comprehensive solutions for multimarket, regional, and global communications programs. Golin is a 2024 Double Grand Prix winner and 2025 Gold and Silver winner from the Cannes Lions International Festival of Creativity. It was most recently named Campaign’s 2025 Global PR Agency of the Year, one of Fast Company’s 2025 Most Innovative Companies, and a 2025 Contagious Pioneer for creative excellence. It’s also PRWeek’s 2025 Global Agency of the Year, 2025 Best Agency in Asia Pacific, 2024 U.S. Overall Agency of the Year, and a U.S. Best Place to Work for the past three years (2022-2024). It was also named one of PRovoke Media’s 2025 Best Agencies in the U.S. and UK, the 2025 Overall Best Agency to Work For in North America, 2024 Best Large Agency to Work For in North America, and 2024 Global Agency of the Year. AMEC has named Golin its Communications Research & Measurement Team of the Year for the past six consecutive years (2019-2024), and Golin is a 2021 Chicago Tribune Top Workplace honoree.