Congenital Hyperinsulinism Family Conference in Fort Worth, TX

2024 CHI Family Conference in Fort Worth, Texas

We are excited to announce that registration for the 2024 Congenital Hyperinsulinism Family Conference in Fort Worth is open! The conference is being organized by Congenital Hyperinsulinism International (CHI) and Dr. Paul Thornton and his staff at the Cook Children’s Medical Center in Fort Worth, Texas. The conference will take place from Friday, May 31, 2024, through Sunday, June 2, 2024.

Jump ahead to the registration here.

The CHI staff, the Cook Children’s team, additional world-renowned physicians, researchers, congenital hyperinsulinism (HI) specialists, HI family members, and CHI advocacy leaders will be presenting at the conference. There will also be interactive sessions where HI families can share their stories and experiences.

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 will start with a welcome reception at the Hilton Garden Inn Fort Worth Medical Center on Friday evening, May 31, 2024. Conference sessions will take place on the Cook Children’s Campus on Saturday, June 1. On Saturday, there will be a conference dinner for all attendees at a restaurant located in the Fort Worth Stockyards. On Sunday, June 2, we are planning a fun family activity for all attendees in the morning at the Fort Worth Zoo that will start at 10 AM – more details are coming soon.

There will also be special programming for young adults, teens, and children, and babysitting will be available during conference sessions.

Conference topics will include:

  • The history of HI research and treatment
  • The genetics of hyperinsulinism
  • Diagnosis and current management (including treatments, when management changes are needed, and sick day modifications)
  • Meet the pathologist – The role of the study of pathology in surgery for congenital hyperinsulinism
  • Meet the surgeon – Focal and Diffuse Pancreatectomies
  • Potential future treatments for congenital hyperinsulinism
  • HI clinical research at biotechnology companies
  • Ask the Experts Panels
  • CHI, your advocacy organization
    • Support/ Advocacy/Policy/Access
    • Awareness/Sharing your stories
    • Research – Collaborative Research Network
    • HI Global Registry

There will also be small break out groups that will include Breakout groups by special topics:

  • How to manage and overcome feeding issues – Dr. Leah Elizondo, Neonatologist
  • How to read a research article – Deborah Rafferty, Research Project Coordinator
  • Managing HI at school
  • Coping with the stress of parenting a child with a rare disease
  • Living with HI as a teenager
  • Living with HI as an adult
  • Special needs and HI
  • Grandparents group
  • Dads group

And Breakout groups by HI subtype:

  • Diazoxide-Responsive Diffuse
  • Diffuse Non-Diazoxide Responsive
  • HI/HA
  • Focal

Confirmed Speakers – as of March 15, 2024

  • Irene Castaneda-Sanchez, MD, Medical Director, Pathology at Cook Children’s Medical Center
  • Antonia Dastamani, MD, Pediatric Endocrinologist at Great Ormond Street Hospital, London
  • Diva D. De León-Crutchlow, MD, MSCE, Chief of the Division of Endocrinology and Diabetes and Director of the Congenital Hyperinsulinism Center, Children’s Hospital of Philadelphia
  • Dr. Leah Elizondo, MD, Neonatologist at Cook Children’s Medical Center
  • Clare Gilbert, RN, Clinical Nurse Specialist at Great Ormond St Hospital, London
  • Mansa Krishnamurthy, MD, MSc, Pediatric Endocrinology Fellow at Cincinnati Children’s Hospital Medical Center
  • Lauren Lopez, PhD, Registry Director, CHI
  • Mahlet Mesfin, Research Manager, CHI
  • Klaus Mohnike, MD, Pediatric Endocrinologist, Professor at Otto-von-Guericke University Magdeburg
  • Kate Morgan, Pediatric Endocrinology Advanced Nurse, Great Ormond St Hospital, London
  • Deborah Rafferty, Research Project Manager at Cook Children’s Medical Center
  • Julie Raskin, MA, Chief Executive Officer, CHI
  • Jennifer Schmitt, Chief Operating Officer, CHI
  • Charles Stanely, MD, Founder of the HI Center at Children’s Hospital of Philadelphia and Professor Emeritus of Pediatrics at the University of Pennsylvania Perelman School of Medicine
  • Paul Thornton, MB, BCh, MRCPI, DCh, Medical Director of the Congenital Hyperinsulinism Center, Endocrine and Diabetes Program at Cook Children’s Medical Center
  • Lisa Truong, CPNP-PC, Nurse Practitioner, Cook Children’s Medical Center
  • John (Chip) Uffman, MD, Medical Director, Pediatric Surgery at Cook Children’s Medical Center


Thanks to generous sponsors and donors, registration for the conference is free for all HI families, patients, doctors, and researchers, including program registration and admission to all conference sessions, dinner on Friday night, lunch and dinner on Saturday, and the optional family outing on Sunday.

We ask that you register here as soon as possible but no later than May 1, 2024.

Hotel Information

CHI has reserved a block of rooms at the Hilton Garden Inn Fort Worth Medical Center. The rate is $149.00 per night (excluding tax, fees, and parking) on Friday, May 31, and Saturday, June 1. To get the group rate, please fill out the room reservation fields on the registration form.


There are limited scholarships for HI families needing financial support and traveling from out of town to stay at the hotel the nights of May 31 and June 1 while attending the conference. Families interested in these scholarships should indicate this on their registration form and fill out our online scholarship form by April 15, 2024. If awarded a scholarship, CHI will reserve the rooms for these families.

2024 Family Conference Sponsors