Congenital Hyperinsulinism International’s Post

“What’s Wrong with my Baby?” - a question that many hyperinsulinism parents know all too well. ➡️ In this episode of the same name, CHI co-founder and CEO Julie Raskin spoke with podcasters at Story Collider to share the first few days of her son Ben’s life. Julie describes the range of complicated emotions that come with this difficult diagnosis and emphasizes the importance of speaking up when something feels wrong. 🔊 Listen to Julie’s inspiring story and join us in raising awareness and supporting those affected by hyperinsulinism (available in video and transcript formats): https://lnkd.in/e7pppGUC 🔗 And visit our blog post at https://lnkd.in/efx8mpuZ to read about Julie's experience on the podcast! #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia

🎂 The HI Global Registry turns 6 years old! 🎉 Help us celebrate by joining HIGR or updating your surveys today! 🗓️ This year, HIGR has expanded to provide all surveys in SIX new languages 🌍️ - French, German, Italian, Korean, Portuguese, and Spanish! The HI Global Registry (HIGR) is the only international, patient-powered registry for people with hyperinsulinism. You can learn more at www.higlobalregistry.org #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia

📣 Registration for our 2024 Family Conference in Liverpool, UK is filling up fast! Please register by tomorrow - October 16th - to ensure you have a spot. 💙 The conference is being organized by Congenital Hyperinsulinism International (CHI) with The Children's Hyperinsulinism Charity UK (CHC) at the Hilton Liverpool City Center in Liverpool, UK. 🗓️ The conference will take place Thursday, November 14th through Saturday, November 16th. 🏨 Our hotel room block is currently full - but you do not need to stay at the hotel to attend the conference! 🔗 Additional information including our confirmed speakers and registration details are available here: https://lnkd.in/e7bQNiTP #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia

📣 NEW! Article "Management strategies and patient outcomes of congenital hyperinsulinism (CHI) related with beckwith-wiedemann syndrome (BWS) – insights from an CHI highly specialized centre" features authors from CHI Center of Excellence Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH): Kate Morgan, Clare Gilbert, Annaruby Cunjamalay & Antonia Dastamani. ➡️ Researchers at GOSH analyzed patients with both HI and BWS to study their outcomes and draw conclusions about medication use and management of carbohydrates. 🔗 Visit https://lnkd.in/gqBdKNPa to read about their findings! #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia ⁠

👧💙 Today is the International Day of the Girl Child! 💙👧 ✨️ At CHI's 2024 Sugar Soirée, 11-year-old Jilani Huffman bravely took to the stage to share her experiences navigating hyperinsulinism as a young girl. Jilani continues to inspire us at CHI and demonstrates the power of sharing her story to motivate change! ✨️ If you'd like to read more about the 2024 Sugar Soirée - including our photo slide show and video interviews with Clare Gilbert, RN and Dr. Mark Sperling - visit our Sugar Soirée page at https://lnkd.in/e8tG3kpE #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia ⁠

🧬 Our Open Hyperinsulinism Genes Project - a collaboration between CHI and the University of Exeter - has provided genetic testing to 942 individuals from 63 counties! 🌍️ Through this initiative, we have turned constraints of limited resources into an advantage for scientific progress while improving the health of children worldwide. 🔗 You can find additional details including contact and testing information at https://lnkd.in/d32u7NvS #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia

📣 NEW exciting opportunity! The Royal College of Midwives will be hosting a webinar available to the public titled "Raising Awareness of Hyperinsulinism and Glucokinase Hyperglycaemia" on November 20th. This is an excellent opportunity to further critical education on the risks of hypoglycemia at birth! A few of the speakers from CHI's Centers of Excellence include: ➡️ Clare Gilbert, Clinical Nurse Specialist in Hyperinsulinism , Great Ormond Street Hospital for Children NHS Foundation Trust ➡️ Elaine Oshea, Congenital Hyperinsulinism Nurse Specialist, Manchester University NHS Foundation Trust ➡️ Zoe Yung, Advanced Nurse Practitioner- Endocrinology, Alder Hey Children’s Hospital ✨️ and more! 🔗 Register at https://lnkd.in/dvpQnQhi #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia ⁠

🗓️ Our next Family Conference will be held in collaboration with the Children’s Hyperinsulinism Charity UK (CHC) on November 14-16, 2024, in Liverpool, UK! 🔗 Please visit https://lnkd.in/e7bQNiTP to learn more about our next Family Conference! Registration is still open - our hotel room block 🏨 is full, but we are taking reservations! Here are just a few of the fantastic speakers we have lined up: ⭐️ Dr. Charles Stanley founded the Congenital Hyperinsulinism Center at Children's Hospital of Philadelphia (CHOP), one of our eight Centers of Excellence! Dr. Stanley is also a Professor Emeritus of Pediatrics at the University of Pennsylvania Perelman School of Medicine, in addition to serving as a member of CHI’s board of scientific advisors! ⭐️ Sir Al Aynsley-Green worked as a Pediatric Endocrinologist at Great Ormond Street Hospital (GOSH), one of our eight Centers of Excellence! Sir Al is the former President of the British Medical Association and served as the former Children’s Commissioner Consultant at his company Aynsley-Green Consulting. #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia ⁠

📣 NEW! "Continuing Rare Disease Treatment With A Compassionate Use Program (CUP)" by Davelyn Eaves Hood, MD, MBA, BCMAS, head of medical & patient affairs, Rezolute, Inc., and Ana Paula Tediosi, head of expanded access program strategy, WEP Clinical. ➡️ In this article, Hood and Tediosi explore "the benefits and challenges of harnessing a compassionate use program (CUP) to further embrace our patient-centric approach to drug development", utilizing Rezolute's experience pursuing their hyperinsulinism drug RZ358. 🔗 You can learn more about these fascinating insights at https://lnkd.in/eaprSem5 #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia ⁠