The CHI Live and Learn Advisory Committee is a comprised of a global group of hyperinsulinism (HI) parents, caregivers, and people with HI who bring their lived experiences to help guide CHI projects and programs. They share their insights, perspectives, and real-world experience to help inform and guide efforts related to HI research, advocacy, and the development of potential new treatments. Advisors are parents or individuals with HI who encompass a wide range of HI diagnoses, life stages, and geographic regions, ensuring that diverse voices and experiences are reflected. Through ongoing collaboration with CHI, and at times, with research and industry partners, the committee helps ensure that the real needs of the HI community remain central to progress.
Purpose of the Committee
The Live and Learn Advisory Committee exists to ensure that people most impacted by hyperinsulinism have a meaningful role in shaping the future of HI care.
The CHI Live and Learn Advisory Committee aims to:
- Provide patient and caregiver-informed feedback on CHI’s research, education, and advocacy initiatives
- Offer insight to CHI partners involved in research, developing treatments, devices, and diagnostic tools
- Elevate lived experience to help guide priorities, decision‑making, and community‑centered solutions
- Ensure that HI patients and families have a meaningful role in shaping the future of HI care
Committee Members
The current Live and Learn Advisory Committee consists of 19 members from 5 different countries.
This is an invitation‑only inaugural group, established to help shape the foundation of the program. As the initiative progresses, CHI plans to expand participation to a wider group of individuals and families in the future. The inaugural term runs from July 1, 2025 – June 30, 2027.
The Live and Learn Committee members are all:
- Individuals with HI or a parent or caregiver of someone with HI
- Willing and able to share personal experiences, perspectives and insights thoughtfully
Looking Ahead
As CHI expands this initiative, additional opportunities will become available for more patients, parents, and caregivers to participate. Our long-term goal is to build a strong, inclusive advisory community that reflects the many different experiences within the HI community across diagnoses, ages, backgrounds, and regions.
By centering lived experience, the Live and Learn Advisory Committee helps ensure that progress in HI research, care, and advocacy is guided by those who know it best.
