The conference was organized by Congenital Hyperinsulinism International (CHI) and the Children’s Hospital of Philadelphia (CHOP).
The CHI staff, the CHOP Hyperinsulinism Center team, additional world-renowned physicians, researchers, congenital hyperinsulinism (HI) specialists, HI family members, and CHI advocacy leaders presented at the conference. There were also interactive sessions where HI families could share their stories and experiences.
View the conference agenda here.
The CHI Family Conferences are a fantastic opportunity to learn more about all aspects of the condition and to meet and get to know members of the global HI community. It is also an excellent opportunity for HI families to meet and share their experiences.
The conference started with a welcome reception at the Philadelphia University City Sheraton hotel on Friday evening, April 14, 2023. Conference sessions took place on the CHOP Campus during the day on Saturday, April 15, and Sunday, April 16. There was a conference dinner for all attendees on Saturday as well.
There was special programming for young adults, teens, and children, as well as babysitting, available during conference sessions.
Former CHI Staff member Janna Pelle joined us on Saturday afternoon, teaching the children our original HI song ‘Down and Up’ and leading them in arts and crafts related to the song for a fun afternoon activity.
On Saturday evening, there was a conference dinner at the University City Sheraton hotel for all attendees with a live dance party with music by Janna Pelle and Eric Vanderzee.
Conference topics included:
- New Hyperinsulinism Guidelines
- Understanding your Genetic Report
- Current HI Treatment Options
- Patient-Powered Research: The HI Global Registry
- Updates on New Investigational Studies
- Ask the Experts Panels
Confirmed Speakers:
- N. Scott Adzick MD, MMM, FACS, FAAP, Surgeon-in-Chief, CHOP
- Indi Banerjee, BBS, MD, MRCPCH, Pediatric Endocrinologist, Royal Manchester Children’s Hospital, Clinical Lead for the Northern Congenital Hyperinsulinism Service (NORCHI)
- Linda Boyajian, MSN, CRNP, Pediatric Nurse Practitioner, CHOP
- Sherri Cohen, MD, MPH, FAAP, Medical Director of Pediatric Feeding and Swallowing Center, CHOP
- Antonia Dastamani, MD, PhD, Pediatric Endocrinologist, Lead, Congenital Hyperinsulinism Service, Great Ormond Street Hospital for Children (GOSH)
- Diva D. De León-Crutchlow, MD, MSCE, Chief of the Division of Endocrinology and Diabetes and Director of the Congenital Hyperinsulinism Center, CHOP
- Susann Empting, MD, Pediatric Endocrinology, Otto-von-Guericke University Magdeburg
- Clare Gilbert, RN , Nurse Specialist, GOSH
- Jennifer Kalish, MD, PhD, Assistant Professor of Genetic and Pediatrics, CHOP, University of Pennsylvania Perelman School of Medicine
- Katherine Lord, MD, Pediatric Endocrinology, HI, CHOP
- Asim Maqbool, MD, Pediatric Gastroenterologist, Co-Director Center for Pediatric Pancreatic Disorders, CHOP
- Heather McKnight, MSN, BSN, BA, CRNP, Pediatric Nurse Practitioner, CHOP
- Klaus Mohnike, MD, Pediatric Endocrinologist, Professor at Otto-von-Guericke University Magdeburg
- Kate Morgan, RN, Nurse Specialist, GOSH
- Kelli O’Connell, MS, RD, LDN, CDCES, CPT, CHOP
- Timo Otonkoski, MD, Ph.D., Professor of Medical Stem Cell Research Children’s Hospital and Biomedicum Stem Cell Center, University of Helsinki, Finland
- Tai Pasquini, PhD, Research and Policy Director, CHI
- Julie Raskin, MA, Executive Director, CHI
- Elizabeth Rosenfeld, MD, Pediatric Endocrinology, HI, CHOP
- Vicki Sanders, MS, LGC
- Show-Ling Shyng, MD, Professor of Chemical Physiology and Biochemistry, Oregon Health & Science University
- Winnie Sigal, MD, Pediatric Endorcinologist, CHOP
- Charles A. Stanley, MD, Founder of the HI Center, CHOP, Professor Emeritus of Pediatrics, University of Pennsylvania Perelman School of Medicine
- Lisa States, MD, Pediatric Radiologist, CHOP
- Nicole Stewart, BSN, RN, HI Nurse Coordinator, CHOP
- Paul Thornton, MB, BCh, MRCPI, DCh, Medical Director of the Congenital Hyperinsulinism Center, Endocrine and Diabetes Program at Cook Children’s Medical Center
- Lora Van Arsdell, PsyD, LCSW
- Jury Vera, RN, BSN, CC
- Chris Worth, PhD Candidate, Pediatric Endocrinologist, Royal Manchester Children’s Hospital
CHIbra Scientific Posters
Submissions are now open for CHIbra Scientific Posters for the Congenital Hyperinsulinism Family Conference. CHIBra Scientific Posters capture your or your child’s HI journey and experience in your own words. Posters play a key role in raising awareness of congenital hyperinsulinism and how it differs from person to person. CHI staff will create the poster based on information and photos you share. If you’ve submitted a poster before, we encourage you to submit an updated version.
View an example of a poster and complete the submission form. The deadline to submit is April 6, 2023. Email klewis@congenitalhi.org with any questions.
Thanks to generous sponsors and donors, registration for the conference was free for all HI families, patients, doctors, and researchers, including program registration and admission to all conference sessions, lunch and dinner on Saturday, and lunch on Sunday.