Wishing everyone in the rare disease community a Happy Rare Disease Day! Today is Rare Disease Day and it is celebrated around the world on the last day of February. For those with rare diseases, Rare Disease Day is the most important day of the year. It is a day to celebrate everyone who has a rare disease, and to use the day as a global platform to share with those not affected, what it means to live with a rare disease.
Every year, the global Rare Disease Day consortium chooses a theme to help us organize our messaging about the day.
This year the theme is “More than you can Imagine.” We asked people with HI and their parents, what about living with HI is more than you can imagine?
Well, this theme really resonated. We have received beautiful and meaningful responses to the question we posed to our community. Since February 3, day after day, we have posted these responses. We intended to stop these posts today, on February 28, but we are not going to stop because we keep receiving incredible submissions and we want to share all of them.
What is really striking is how much love there is in each and every family that has made a post. The posts share how complicated and difficult it is to live with HI, but they also describe how brave, strong, and resilient people with HI are. People have become wiser because of what they have learned from living with HI. Here’s just one example written by Meina from Denmark: “My daughter has faced incredible challenges with hyperinsulinism, however she remains brave, confident, and full of love. She has taught me so much about life – strength, joy, and the beauty of small victories. The way she embraces the world with courage, despite everything, has been more than you can imagine.” What could be more heartwarming than that? And each and every post is another gem. You can take a look at the whole collection, thus far at More Than You Can Imagine.
This topic and the posts have been so engaging that people who were not connected to CHI have reached out to become part of the community. You can watch a whole slideshow of the “More than you can Imagine” posts here.
In addition to this wonderful awareness campaign, in honor of Rare Disease Day 2025, CHI has been hard at work all month joining other rare disease advocates to support an expansion rather than a reduction of funding for rare disease research. We are also advocating for continued support to people with rare diseases through a campaign to reject cuts to the Medicaid program in the United States. Finally, we have been focused on supporting people in pockets of the world who are not able to access life-saving medications like diazoxide.
Lastly, we have been planning for the 3rd Congenital Hyperinsulinism Collaborative Research Network (CRN) Meeting which starts tonight in Lisbon, Portugal. Patient advocates, physicians, and researchers – members of the CHI CRN — have gathered for a two-day meeting. In just a few hours we will kick off our two-day meeting. The mission of the CRN is to deliver faster and more accurate diagnosis, drive new evidence-based treatments and cures, standardize clinical guidelines, and facilitate increased and improved access to care.
The momentum of Rare Disease Day 2025 will stay with me as we build on the success of this day to make positive change for the whole rare disease community. Enjoy the day.
