164 people gathered at the 2017 Congenital Hyperinsulinism Family Conference at the Stockton Seaview Hotel in Galloway, NJ on July 15 and 16. There were 47 families in attendance from 15 states. Speakers and participants arrived from 6 countries.
Representative comments from attendees included:
“Everything about the conference was wonderful.”
“I love that my HI kid and his sibling were able to be a part of the conference, too. Very eye-opening!”
“Great meeting – unique mix of technical and practical, wonderful breadth, across community.”
Participants gained a comprehensive understanding of HI, learning about everything from the mechanism of disease, genetics, diagnosis, treatment, to current standards of care. There were also sessions on developmental and medical outcomes, feeding issues, managing HI at school and much more. There were presentations about new investigational projects at the pre-clinical and clinical stage, and an update from Congenital Hyperinsulinism International (CHI) on research, awareness, and support programs, the Centers of Excellence Program, and the HI Global Registry. One of the most moving and inspiring aspects of the conference were the HI-Stories presented by those with HI and their parents.One of the unique features of the conference is that participants include a varied set of stakeholders in the HI community including patients, caregivers, researchers, clinicians, and biotech professionals. The sharing of knowledge and observations from different vantage points and experience was refreshing and fodder for future novel projects.
The conference was co-hosted by CHI and The Children’s Hospital of Philadelphia (CHOP).
Speakers included researchers and physicians, therapists, patient advocates, HI family community members, and members of the biotech community.
Babies and children with HI, as well as their siblings, were also at the conference looked after by excellent babysitters during the conference presentations. Children had a wonderful time playing and doing art projects.
The Stockton Seaview hotel was an ideal location to hold the conference, nearby to both the New York and Philadelphia metropolitan areas, and yet a world away. It was a chance for HI families to learn, network, and relax in a family-friendly setting.
The Conference in pictures:
