Congenital Hyperinsulinism International

Congenital Hyperinsulinism International (CHI) is excited to announce that a portion of our Family Conference in Liverpool, UK will be available via live stream! 💙 We hope you can join us on Friday, November 15, 2024, to tune in and watch our accomplished speakers! The live stream will begin at 2:00 PM GMT / 14:00 GMT (9:00 AM EST / 18:00 GST) and will run for three hours. We hope you will join us virtually for these exciting insights and discussions! Please register as soon as possible to guarantee your spot: https://lnkd.in/eGZ6K-sY 🔗 To read more about the conference topics and speakers, visit our Liverpool conference page: https://lnkd.in/e7bQNiTP 🔗 #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia | Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Someone with HI asked our community: “Has anyone experienced gallstones with lanreotide?” The HI Global Registry (HIGR) has an answer. Patient-reported data from HIGR tells us that 22% of people taking lanreotide to treat their HI (or approximately 1 in 5) reported experiencing gallstones or gallbladder sludge. What was your experience with lanreotide like? Join HIGR today to share your story! You can help empower the patient voice today. Visit www.higlobalregistry.org to learn more about HIGR, the only patient-powered registry for HI research. #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia | Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

📧 Check out our autumn newsletter, HI-lights! 🍁 HI-lights includes news from CHI with updates on our programs, partnerships, links to research studies, articles, videos and podcasts, and upcoming events! To read the full newsletter, visit https://lnkd.in/eC5--Re5 🔗 📬️ Are you on our mailing list? Stay connected with CHI and all things hyperinsulinism at https://lnkd.in/e9gnH5aX 🔗 #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia | Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

The HI Global Registry (HIGR) can now collect continuous glucose monitor (CGM) values! Share your glucose values for hyperinsulinism (HI) research. 🔎 Visit higlobalregistry.org to log in and start sharing your CGM data. Reminder: Your data is always de-identified for research studies. Not registered yet? It’s not too late to contribute your experiences to HI research! Learn more at higlobalregistry.org and sign up today. #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia | Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

❗️ Recurrent hypoglycemia in newborns, infants and children is not normal. Learn the signs & symptoms of hypoglycemia to prevent brain damage and death.⁠ ⁠ 🔁 Share this graphic to spread awareness of the dangers of hypoglycemia. ⁠ ⁠ 🔗 You can find CHI infographics at https://lnkd.in/dmRf5ZEH and posters at https://lnkd.in/dUEVzbh #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia | Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

An HI parent asked: “How many times do you take diazoxide each day?” The HI Global Registry (HIGR) has an answer. Patient-reported data from HIGR tells us that of the 122 people who were currently taking diazoxide, 5% took 1 dose per day, 59% take 2 doses per day, and 36% take 3 doses per day. No-one reported taking 4 or more doses per day. How many doses of diazoxide do you or your child take daily? Join HIGR today to share your story! You can help empower the patient voice today. Visit www.higlobalregistry.org to learn more about HIGR, the only patient-powered registry for HI research. #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia | Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

So fantastic to spend three days at the #NORDsummit learning from and connecting with people linked by a shared passion to make the world better for the millions of people living with rare diseases. When I think of all the brilliant sessions attended and incredible discussions had, and when I imagine my own experience multiplied by the hundreds of other attendees all having their epiphany moments, I feel very optimistic that the future will be re-imagined for those impacted by rare disease. It was so special to see and spend time with many dear old friends, meet in-person people I have gotten to know only virtually over the years but never met, and to connect with new wonderful people. There are so many other people I didn't get a photo with but shared a special moment or appreciated your talk! What an honor to be at the meeting representing Congenital Hyperinsulinism International. Donna Appell Ashley Appell Dr. Tracy Dixon-Salazar David Lapidus Melody Kisor Leah Schust Myers Susan Dando Jenny Burke Jill Kiernan Mousumi Bose National Organization for Rare Disorders Congenital Hyperinsulinism International

❓️ Did you know that congenital hyperinsulinism has its own Wikipedia page? ✍️ In August 2023, Team CHI met with experts in the HI field and Wikipedia authors to edit and compile a comprehensive article detailing the symptoms, causes, diagnoses, and history of HI, as well as the many patient advocacy groups and Centers of Excellence working to support patients! 🔗 You can find the full Wikipedia article here: https://lnkd.in/eAFFjU_m ⁠ ⁠ #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia ⁠

➡️ Ashlee loves going to work, but she worries about blood sugar drops after an 8 hour day. 💙 What would your life be like without lows? Tell us in the comments below or send us a message. 💡 Learn more about HI clinical trials for a #FutureWithoutLows here: https://bit.ly/2XTduFm #hyperinsulinism #raredisease #congenitalhyperinsulinism #hypoglycemia

📣 Registration for our 2024 Family Conference in Liverpool, UK is filling up fast! Please register by tomorrow - October 25th - 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