Rare Disease Day 2025 – Friday, February 28 – 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 have a few ways that we will be celebrating this year – read on for more info on all of them!
This year’s official Rare Disease Day theme — more than you can imagine — shines a spotlight on 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 can include the highs, lows, and everything in between relating to life with hyperinsulinism or the hyperinsulinism community. Your experiences — both triumphs and challenges — are powerful, and we want to highlight them!
How to participate:
- Share with us the aspect(s) of life with hyperinsulinism that are “more than you can imagine” through a quote as shown above!
- Send a recent photo of yourself that we can include (alone or with a loved one)
- OR record yourself sharing your thoughts on your phone and send us the video
- Submit them: DM us on socials or email the completed statement and photo or video to [email protected]
Save the date – Join us on Zoom February 21st!
We will gather the HI Community together over Zoom to celebrate Rare Disease Day and share these triumphs and challenges together. CHI staff will also announce some exciting upcoming events! Join us on Friday, February 21st at 1:30 pm EST for this uplifting event – jump ahead to register here today. We hope to see you then!
Support Rare Disease Day in our More than you can Imagine T-shirts!
Buying a Rare Disease Day T-shirt is more than just a purchase—it’s a way to make a real impact!
- Raise Awareness – Wearing your T-shirt helps spark conversations and spread awareness about congenital hyperinsulinism and other rare diseases.
- Fund Critical Work – Proceeds from the T-shirts help CHI continue its mission to support families, fund research, and advocate for better treatments and care.
- Be Part of Something Bigger – By wearing your T-shirt on Rare Disease Day (Feb 28, 2025) and beyond, you’re joining a global movement dedicated to making rare diseases more visible.
Our Rare Disease Day 2025 tees are available for purchase in our Bonfire store. You can order adult and youth short and long-sleeved T-shirts, sweatshirts, and more here. 25% of proceeds will go to CHI.
CHI x Shining Sol Candle Company Now Offering Candles for Hyperinsulinism Research and Support!
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 are offering their most popular scents – White Tea, Egyptian Amber, and Sugared Fruit and Citrus – in a CHI-branded edition. Candles are available for purchase here.
Each candle purchased is more than just a warm light for your home – it’s a beacon of hope and awareness. A portion of the proceeds will be donated to CHI to help fund hyperinsulinism research, support, and education.
Order by February 12th to receive your candle in time for Rare Disease Day!
This CHI-collaboration candle will be available to order until March 15.
