Living with HI Yesterday, Today, and Tomorrow: Learning from our past, making the best of now, and collaborating for a brighter future
Congenital Hyperinsulinism International is very excited to announce registration is now open for our 2021 Virtual Family Conference taking place Saturday, June 5, 2021. The conference website will be open from 9:30 AM Eastern US Time until 4:00 PM Eastern US Time. The conference sessions will take place from 10:30 AM Eastern US Time until 2:05 PM Eastern US Time. Conference attendance is free of charge.
As always, the conference will include live panels and presentations from the leading experts in the field of HI, videos, interactive Q & A, small group breakout sessions, and exhibit space with the latest information from our sponsors and partners. This conference offers unparalleled access to knowledge in the field of HI.
The CHI Family conferences are unique because of the collaborative quality of our events. We are using a new and highly interactive platform for the conference, and all participants will have the opportunity to ask live questions and engage in fascinating conversations while learning from the leading experts and sharing the patient, caregiver, research, and clinical experience. The conference also offers a unique opportunity to learn about cutting edge clinical research projects from the biotech community, and unique and fascinating patient-powered projects.
We will have the opportunity to break into small groups. For HI families, we will gather based on where we are in the life cycle or our role in the family. We are thrilled to be having our first ever Grandparents group. We encourage all families who have living grandparents to invite them to the conference to participate in this group (aunts and uncles can also join this group!). We will also have an HI sibling group and HI teen and young adult group. As always, we have a group for HI parents and a separate group for parents of the newly diagnosed.
We will also have small groups for medical professionals and biotech life sciences professionals, with special topics that will be crowd-sourced.
The conference platform has fun and interactive features that will be intriguing for all. We will have a social connect wall – so your tweets and Instagram posts can be shared during the conference and a virtual photo booth so our attendees can send us a selfie from home! (Note the photo both images will not be broadcast outside of the conference platform during the conference.) We will also have a family fun event on Saturday at 2:15 PM EDT with entertainment — There’s something for everyone!
We also have a call for videos – Help us create videos about life with hyperinsulinism during the pandemic! Click here to learn more!
Agenda Topics will include:
- HI-Stories – Patient Experience Videos by HI Families
- Short Panel Discussion with Psychologists to Discuss Coping with HI
- CHI Collaborative Research Network Update: Julie Raskin, Dr. Diva De León-Crutchlow and Dr. Paul Thornton
- HI Global Registry – Patient Powered Research Update from PI Tai Pasquini
- Fundraising and Upcoming Events Update from Jennifer Schmitt
- Ask the Experts (HI Expert Clinicians/Physicians and Geneticists)
- Updates from our biotech sponsors: Rezolute, Crinetics, Zealand Pharma, Hanmi
Small group breakout sessions will include:
Living with HI yesterday, today and tomorrow:
- Newly diagnosed with HI
- Teenagers with HI
- Young adults with HI
- HI Siblings
- HI Parents
- HI Grandparents
- Medical Professional/Biotech (Treating HI Yesterday, Today, and Tomorrow)
Confirmed speakers include (as of May 18, 2021):
- Amanda Ackermann, MD, PhD – Children’s Hospital of Philadelphia, PA, USA
- Indi Banerjee, MD – Royal Manchester Childrens Hospital, Manchester, UK
- Linda Boyajian, CRNP – Children’s Hospital of Philadelphia, PA, USA
- Louise Conwell, MBBS (Hons), PhD – Queensland Children’s Hospital/University of Queensland, Australia
- Caroline Culen, PhD – Medical University of Vienna, Austria
- Antonia Dastamani, MD, PhD – Great Ormond Street Hospital, London, UK
- Diva D. De León-Crutchlow, MD, MSCE – Children’s Hospital of Philadelphia, PA, USA
- Susann Empting – Otto-von-Guericke-Universität Magdeburg, Germany
- Sarah Flanagan, PhD – University of Exeter, UK
- Clare Gilbert, Clinical Nurse Specialist – Great Ormond Street Hospital, London, UK
- Heather McKnight-Menci, CRNP – Children’s Hospital of Philadelphia, PA, USA
- Klaus Mohnike, MD – Otto-von-Guericke-Universität Magdeburg, Germany
- Leela Morrow, PsyD – Children’s Hospital of Philadelphia, PA, USA
- Victoria Roberts Sanders, MS, LCGC – Children’s Hospital of Philadelphia, PA, USA
- Pratik Shah, MD – Royal London Children’s Hospital, London, England
- Winifred Sigal, MD – Children’s Hospital of Philadelphia, PA, USA
- Charles Stanley, MD – Children’s Hospital of Philadelphia, Emeritus, PA, USA
- Dina Tallis EdD – Executive Director, Curriculum & Instruction, Imlay City, MI, USA
- Paul Thornton, MD – Cook Children’s Hospital, Fort Worth, TX, USA
- Lisa Truong, CPNP – Cook Children’s Hospital, Fort Worth, TX, USA
- Lora Van Arsdell, PsyD LCSW – Saint Martin’s University Counseling and Wellness Center, Lacy, WA, USA
- David Zangen, MD – Hadassah Hospital, Jerusalem, Israel
Sponsors, as of May 6, 2021: