Congenital Hyperinsulinism International hosted our First Virtual Congenital Hyperinsulinism Family Conference on July 11-12, 2020 from 10:30 AM to 3:00 PM (EDT) each day.
420 people from 33 countries, a true worldwide HI community participated in the Conference. 38 speakers contributed to the live presentations, interactive Q & A, and small group discussions in breakout rooms. The conference also included videos, an exhibit hall, and even a live performance of our new HI song “Down and Up” by Janna Pelle.
You can view presentation slides from our conference presenters here.
Agenda Topics included:
- HI Status Report from Diva D. De León-Crutchlow, MD, CHOP
- HI Status Report from Paul Thornton, MD, Cook Children’s
- Presentations from Biopharmaceutical Companies
- Coping with the Stress of Parenting a Child with Complex Medical issues
- HI Global Registry – Patient Powered Research
- HI-Stories – Patient Experience Videos by HI Families
- Ask the Experts (HI Expert Clinicians/Physicians and Geneticists)
- Ask the Experts about HI Research (Biotechs and expert academic researchers, and HIGR)
Small group breakout sessions included:
Gathering by HI Type/Professionals in Virtual Breakout Rooms
- Diazoxide-Responsive Diffuse*
- Diffuse Non-Diazoxide Responsive*
- HI/HA*
- Focal*
- Post-pancreatectomy Diabetes/Pancreatic insufficiency*
- The Genetics of Hyperinsulinism*
- Managing Hypoglycemia/A breakout room for clinicians++
Gathering by HI Issues or Stage of Life/Professionals in Virtual Breakout Rooms
- Infants and Toddlers with HI*
- Developmental Delays*
- Managing HI at School*
- HI Teenagers*
- Living with HI as an Adult*
- Feeding and Nutrition*
- Medication/Treatment Access Issues/A Breakout Room for Clinicians++
Confirmed Panelists, Presenters and Facilitators:
Amanda Ackermann, MD, PhD
Children’s Hospital of Philadelphia (CHOP), PA USA
Seungjae Baek, MD, PhD
Hanmi Pharmaceuticals, Seoul, Korea
Indi Banerjee, MD
Royal Manchester Childrens Hospital, Manchester, UK
Sarah Barnes, MS, RD, CSP, LDN
CHOP, PA, USA
Linda Boyajian, CRNP
CHOP, PA, USA
Sherri Cohen, MD, MPH, FAAP, LDN
CHOP, PA, USA
Louise Conwell, MBBS(Hons), PhD
Queensland Children’s Hospital / University of Queensland, Australia
Ed Damiano
Beta Bionics, MA, USA
Antonia Dastamani, MD
Great Ormond Street Hospital (GOSH), London, UK
Louise Doodson, Clinical Nurse Specialist
GOSH, London, UK
Mark Dunne, PhD
University of Manchester Hyperinsulinism Center, Manchester, UK
Diva D. De León-Crutchlow, MD, MSCE
CHOP, PA, USA
Ranna El Khairi, MD
GOSH, London, UK
Jordan Evans, RN
CHOP, PA, USA
Christine Ferrara-Cook, MD, PhD
Crinetics Pharmaceuticals, CA, USA
Sarah Flanagan, PhD
University of Exeter, UK
Julie M. Gettings, Ph.D.
CHOP, PA, USA
Clare Gilbert, Clinical Nurse Specialist
GOSH, London, UK
Davelyn Hood, MD, MBA
CHI, TX, USA
Katherine Lord, MD
CHOP, PA, USA
Asim Maqbool, MD
CHOP, PA, USA
Heather McKnight-Menci, CRNP
CHOP, PA, USA
Maria Melikian, MD, PhD
Endocrinology Research Centre, Moscow, Russia
Klaus Mohnike, MD
Otto-von-Guericke-Universität Magdeburg, Germany
GOSH, London, UK
Erin O’Boyle,
Rezolute, CA, USA
Tai Pasquini, PhD
CHI, MA, USA
Janna Pelle
CHI, NY, USA
Catherine Peters, MD
GOSH, London, UK
Julie Raskin
Conference Director
CHI, NJ, USA
Courtney Reynolds, MPH
Cook Children’s, Fort Worth, TX
Jennifer Schmitt
Conference Associate Director
CHI, NJ, USA
Senthil Senniappan
Alder Hey Hospital, Liverpool, UK
Pratik Shah, MD
Royal London Children’s Hospital
Barts Health NHS Trust, London, UK
Winifred Sigal, MD
CHOP, PA, USA
Charles Stanley, MD
CHOP, Emeritus, Philadelphia, PA, USA
Nicole Stewart, RN
CHOP, PA, USA
Paul Thornton, MD
Cook Children’s Hospital, Fort Worth, TX, USA
