Rare Disease Day is a global movement dedicated to celebrating and amplifying the voices of those living with rare diseases and their advocates. Held annually on February 28th, this day unites the rare disease community worldwide in coordinated efforts to raise awareness, promote advocacy, and champion better care for all. This year, we have a few fun things planned throughout the month of February that we hope you will be a part of: Rare Disease Day T-shirts, a virtual event on Zoom and more!
Every year, Congenital Hyperinsulinism International launches a campaign to spotlight the strength of the HI community and advocate for greater awareness. This year, we’re spotlighting the urgent need for early detection and treatment of HI, as well as the need for increased awareness of HI at birthing hospitals. Our ultimate goal is to drive meaningful improvements in newborn hypoglycemia screening protocols and follow-up care guidelines.
Be a part of this year’s campaign! Together, we can amplify the message that timely diagnosis and continuous care for people with hyperinsulinism must start at birth. Share your own story, reshare our posts, and help spread the word —every action makes a difference!
Here’s how to join:
In our form, we’ll ask you to choose from one of three options related to blood glucose checks and treatment your child may have had at the hospital or birthing center where they were born:
- My/my child’s hypoglycemia was recognized and correctly managed at the hospital where I was/they were born.
- My/my child’s hypoglycemia was recognized at the hospital where I was/they were born but was/were sent home without an HI diagnosis.
- I/my child was sent home from the hospital where I was/they were born without having blood sugar checked.
We will also ask you to share what you wish every birthing center knew about hyperinsulinism.
Use the arrows to advance through the slideshow below:
Here are some example responses:
- I wish every hospital knew … “that a simple drop of blood can start the path to a diagnosis … because my son is so precious to me!”
- I wish every hospital knew … “the signs and symptoms of HI, and to check a baby’s blood glucose as soon as there is cause for concern.”
After completing this quick form, be sure to email Communications Associate Lily Barnett at Lbarnett@congenitalhi.org with an accompanying photo. With your responses to the form and photo, we will create your personalized message for CHI’s Rare Disease Day 2026 campaign.
Coming soon: Make your impact go even further: Join our letter-writing campaign!
Our Rare Disease Day Campaign is just the beginning. We will also be announcing a letter-writing campaign later this month to make our awareness efforts to even further. Want to learn more and get involved? Sign up for our mailing list for more information!
Thank you to those who joined us to gather with the HI community over Zoom on Thursday, February 19th. We shared each other’s campaign submissions, discussed the letter-writing campaign, went over new ways to get involved, and more! It was a wonderful opportunity to meet HI families around the world that we look forward to each year.
