Happy 2025! We hope the new year is off to a good start for all our families. As mentioned in our last newsletter, the APS Type 1 Foundation will be sharing a number of resources leading up to Rare Disease Day on February 28th. Rare Disease Day (video link) is celebrated worldwide to raise awareness of rare diseases and their impact on patients’ lives. Our goal is to enable all our community members to recognize the day in a way that feels impactful and personal to their individual lived experience. By sharing a diverse range of ideas over the next two months, we hope that something will resonate with each of you. This first email is aimed at students of all ages and has links to big and small activities that can be implemented at a school, a club (Girl/Boy Scouts, a sports team), a religious organization, with a group of friends, and more. We encourage you to have a conversation about what Rare Disease Day does, or could, mean to your family and whether your child/children want to take the leap and share their own experience with APS Type 1. The materials below can also be adapted and used by siblings who want to help raise awareness.
- DIY Rare Disease Day: This website was developed by Julia Band Orange, who lives with APS Type 1, and Julia Finch, the sister of Sam Finch, who is also living with APS Type 1. Highlights include printable posters, speech outlines, a template for a school newspaper article, and instructions for making ribbon pins out of blue jeans to recognize “Jeans for Genes Day”.
- Rare Disease Day School and Campus Playbook: download this playbook from the NORD website to learn ways to “stripe out” at school in honor of the Rare Disease Day zebra mascot. Fun ideas include encouraging a team, class, or even a whole school to wear stripes on February 28th. On the same page of this website are downloadable materials for ally teachers that want to help promote awareness.
- Explaining Living with a Rare Disease to Children and Teenagers: The RareDiseaseDay.org website has stories, lesson plans, slides and quizzes tailored to different age groups. All are designed to help explain rare diseases to kids.
We hope you find something in this list that looks exciting or sparks other creative ideas. We’d love to support your efforts, so reach out at info@apstype1.org if we can help.
More to come!