Even as we made progress, we kept returning to the same challenges: research on programs for teens and young adults followed similar patterns: they overlooked the outcomes that mattered most to young people and left few platforms for young voices to share their ideas and influence change. By then, we ourselves had aged out of being “young” and needed a way to get the next generation of patient advocates involved in research. 

So in 2019, we decided to start something completely new. We wanted to bring together young patients who want to use their lived experiences to shape research and healthcare. And we wanted to provide them with the community and mentorship that we once longed for. This group would share their knowledge and skills, creating more ways for other young patients to get involved and contribute to meaningful change. 

Knowing we needed someone with equal passion for young patients and expertise in grassroots community efforts, we recruited Jennifer Ziegler to join our team, followed by our first young patient partners – Hayden and Jaxon. In 2020, we received our first award from the Patient-Centered Outcomes Research Institute (PCORI) to create a Leadership Research Council. In 2021, the inaugural Council Members officially named this group the Young Patients’ Autoimmune Research and Empowerment Alliance (Young Patients’ AREA).

Although we met by chance, the community we are helping to build is rooted in intention and belonging. Young Patients’ AREA exists so young patients understand they belong, know their value, and can use their stories and experiences to shape research on the issues that matter most to them. Together we work to improve health outcomes for young people everywhere.