2025
“Testing a Continuous Glucose Monitoring Assessment Tool for Congenital Hyperinsulinism.”
Conference Organizer: American Diabetes Association (ADA)
Conference Name: 85th Scientific Sessions of the American Diabetes Association (ADA)
Location & Date: Chicago, IL, USA, June 20-23, 2025
Authors: Kristen Rohli, Katherine Lord, Tai Pasquini, Julie Raskin, and Paul Thornton
Overview: Reports on the work of the CHI Collaborative Research Network’s Glucose Monitoring group to create and test a CGM assessment tool to assess the benefit of a CGM.
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“Collaborative Global Advocacy to Improve the Lives of Children and Families with Congenital Hyperinsulinism.”
Conference Organizer: European Society for Paediatric Endocrinology (ESPE)
Conference Name: Joint Congress of the European Society for Paediatric Endocrinology (ESPE) and the European Society of Endocrinology (ESE) 2025
Location & Date: Copenhagen, Denmark, May 10-13, 2025
Authors: Julie Raskin, Heather McKnight, Clare Gilbert, and Albert Aynsley-Green
Overview: Reports on the work of the CHI Collaborative Research Network’s Advocacy and Access workgroup to create a list of the key needs to care for individuals living with HI. A similar poster was presented at the 2025 World Orphan Drug Congress in Boston, USA.
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“Feeding Issues: An Under-Recognized Complication in People with Hyperinsulinism”
Conference Organizer: European Society for Paediatric Endocrinology (ESPE)
Conference Name: Joint Congress of the European Society for Paediatric Endocrinology (ESPE) and the European Society of Endocrinology (ESE) 2025
Location & Date: Joint Congress of the European Society for Paediatric Endocrinology (ESPE) and the European Society of Endocrinology (ESE) 2025
Authors: Lauren Lopez, Tai Pasquini, and Julie Raskin
Overview: Uses data from the HI Global Registry to characterize the presence of feeding issues in individuals with HI and the impact on their families.
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“The Impact of Congenital Hyperinsulinism on Family Finances and Time: A Report from the HI Global Registry”
Conference Organizer: Pediatric Endocrine Society (PES)
Conference Name: PES Annual Meeting
Location & Date: National Harbor, MD, USA, May 15-18, 2025
Authors: Lauren Lopez, Kristen Rohli, Julie Raskin, and Tai Pasquini
Overview: An update on the 2024 report on the financial burden of HI on families based on HI Global Registry Data
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2024
“Developing a Multi-Disciplinary Collaborative Research Network to Accelerate the Understanding and Treatment of the Rare Disease Congenital Hyperinsulinism.”
Conference Organizer: World Orphan Drug Congress
Conference Name: World Orphan Drug Congress USA 2024
Location & Date: Boston, Massachusetts, USA, April 23-25, 2024
Authors: Tai Pasquini, Indraneel Banerjee, Louise Conwell, Antonia Dastamani, Diva De León, Sarah Flanagan, David Gillis, Jennifer Kalish, Katherine Lord, Jennifer Schmitt, Charles Stanley, Paul Thornton, David Zangen, and Julie Raskin
Overview: Provides more details on the process the CHI Collaborative Research Network (CRN) went through to create the prioritized research agenda.
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“The Impact of Congenital Hyperinsulinism on Family Finances and Time: A Report from the HI Global Registry.”
Conference Organizer: European Society for Paediatric Endocrinology (ESPE)
Conference Name: 62nd Annual ESPE
Location & Date: Liverpool, UK, November 16-18, 2024
Authors: Lauren Lopez, Julie Raskin, and Tai Pasquini
Overview: Utilized data from the HI Global Registry to describe aspects of the financial burden of HI on the families of people with HI.
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“Genetic Testing Access and Results for Patients with Congenital Hyperinsulinism.”
Conference Organizer: National Organization for Rare Disorders (NORD)
Conference Name: 2024 NORD Breakthrough Summit
Location & Date: Washington DC, USA, October 20-22, 2024
Authors: Julie Raskin, Tai Pasquini, Lauren Lopez, Jayne Houghton, and Sarah Flanagan.
Overview: Provides the updated results of the genetic testing conducted through a partnership established in 2018 between Congenital Hyperinsulinism International (CHI) and the University of Exeter.
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2023
“Neurologic Outcomes of HI Global Registry Participants.”
Conference Organizer: Children’s Hospital of Philadelphia (CHOP)
Conference Name: Hyperinsulinism — Novel Genes, Drugs and Guidelines
Location & Date: Philadelphia, PA, USA, April 13-14, 2023
Authors: Tai Pasquini, Paul Thornton, Diva De León, Mahlet Mesfin, and Julie Raskin
Overview: Utilizes HI Global Registry data to report on the timing of HI diagnosis and the frequency and types of subsequent neurologic diagnoses.
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“Developing a Collaborative Research Network to Accelerate the Understanding and Treatment of the Rare Disease Congenital Hyperinsulinism”
Conference Organizer: European Society for Paediatric Endocrinology (ESPE)
Conference Name: 61st Annual ESPE
Location & Date: The Hague, Netherlands, September 21-23, 2023
Authors: Tai Pasquini, Indraneel Banerjee, Louise Conwell, Antonia Dastamani, Diva De León, Sarah Flanagan, David Gillis, Jennifer Kalish, Katherine Lord, Jennifer Schmitt, Charles Stanley, Paul Thornton, David Zangen, and Julie Raskin
Overview: Reports on the formation of the CHI Collaborative Research Network (CRN) and the subsequent process to establish a prioritized research agenda to identify the most pressing challenges in research and advocacy for the HI community. A similar poster was also presented at the Chan Zuckerberg Initiative Convening in California in 2024.
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2022
“Utilizing PES hypoglycemia guidelines to evaluate presenceof known risk factors in HI Global Registry participants.”
Conference Organizer: European Society for Paediatric Endocrinology (ESPE)
Conference Name: 60th Annual ESPE
Location & Date: Rome, Italy, September 15-17, 2022
Authors: Tai Pasquini and Julie Raskin
Overview: Provides data from the HI Global Registry to identify which participants reported Pediatric Endocrine Society hypoglycemia screening factors at birth and if those individuals were identified as at risk by their birthing facility prior to discharge.
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2021
“Genetic Testing Access and Results for Patients with Congenital Hyperinsulinism as Conducted through the CHI and University of Exeter Partnership.”
Conference Organizer: European Society for Paediatric Endocrinology (ESPE)
Conference Name: 59th Annual ESPE
Location & Date: Virtual, September 22-26, 2021
Authors: Julie Raskin, Tai Pasquini, Jayne Houghton, Mahlet Mesfin, and Sarah Flanagan
Overview: Provides the results of the genetic testing conducted through a partnership established in 2018 between Congenital Hyperinsulinism International (CHI) and the University of Exeter.
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“Frequency of Hypoglycemia in HI Global Registry Participants.”
Conference Organizer: Pediatric Endocrine Society (PES)
Conference Name: 2021 PES Virtual Annual Meeting
Location & Date: Virtual, April 30-May 3, 2021
Authors: Tai Pasquini and Julie Raskin
Overview: Shared data from the HI Global Registry on reported frequency of trends of hypoglycemia and feeding frequency by different sub-groups within the registry. A similar poster was presented at the virtual Global Genes’ Rare Patient Advocacy Summit in 2021.
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2020
“Assessing global access to treatments and care for people living with hyperinsulinism.”
Conference Organizer: National Organization for Rare Disorders (NORD)
Conference Name: NORD Rare Summit
Location & Date: Virtual, October 8-9, 2020
Authors: Julie Raskin, Tai Pasquini, and Davelyn Eaves Hood
Overview: Provided an overview of the results of a 2018 global access survey of pediatric endocrinologists from 46 countries to assess access to key HI treatments.
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