Rare Disease Day – which was on February 28th – is a day dedicated to celebrating and amplifying the voices of those living with rare diseases, as well as their advocates. This special occasion unites the rare disease community for a day of coordinated global efforts to raise awareness and promote advocacy.
We celebrated in many different ways this year through our global, digital network; our CEO Julie Raskin captured this in a blog post available to read here.
The 2025 official Rare Disease Day theme — more than you can imagine — showcased the power of resilience, and it inspired us to ask our hyperinsulinism community: What aspect of life with hyperinsulinism has proved to be more than you can imagine? This included the highs, lows, and everything in between relating to life with hyperinsulinism or the hyperinsulinism community. View the slideshow below to read through the wonderful submissions we received.
Our CHI community supported Rare Disease Day in our “more than you can imagine” t-shirts – 25% of proceeds went to CHI to support hyperinsulinism research, care, and medical access.
On February 21st – one week before Rare Disease Day – CHI gathered virtually with 55 people from the hyperinsulinism community from 16 different countries! We shared our “more than you can imagine” statements, which sparked many valuable discussions between people with HI, caregivers, and advocates.
CHI x Shining Sol Candle Company
In honor of Rare Disease Day, Elizabeth Cooper, who was born with HI, created a fundraiser with her Uncle’s company, Shining Sol Candle Company. They offered their most popular scents – White Tea, Egyptian Amber, and Sugared Fruit and Citrus – in a CHI-branded edition. CHI candles are no longer available for purchase. A portion of the proceeds was donated to CHI to help fund hyperinsulinism research, support, and education.
