Rare diseases affect approximately 1 in 15 people globally, and for many, the journey begins in childhood. Today, thanks to advancing medical innovation and continued R&D, people are living longer, richer lives with rare diseases. This means that young patients and their caregivers now navigate more of life’s transitions. While this is a wonderful aspect of parenting and growing up, and a symbol of scientific progress, transitions can present unique challenges for this community, for example, learning to manage medical care, balancing education with health needs, and maintaining social connection with peers.

And certainly, Rare Disease Day is an important moment to raise awareness of the evolving needs of the rare disease community, but one day of conversation is not enough. That’s why Golin Health is embarking on a new initiative: new research focused on understanding the needs of the youngest generation of rare disease patients as they transition to managing their own care.

Today’s youth consume media, forge friendships and advocate for themselves and others in entirely different ways than their parents do. So, we want to hear directly from children and young adults with rare disease to explore their perspectives on the transition to adulthood. What do they want from healthcare providers, parents, and peers? And how does this compare to the wants of parent caregivers? We believe that understanding these discrepancies is vital to communicating effectively with young adult and parent audiences.

By centering patients in all we do, we aim to provide insights that are both meaningful and actionable. By hearing directly from young patients, we can build more effective support systems, more appropriate language around care and customized resources that can help patients and their caregivers thrive.

The rare disease population is incredibly diverse and often goes unheard, which is why we still have so much to learn. We invite you to join us in celebrating the resilience and strength of rare disease patients. Together, we can bring health within reach for more people. Stay tuned for our findings — we’re just getting started.