APS Type 1 is considered a “rare disease” because it affects fewer than 1 in 2,000 people. However, with over 6,000 conditions meeting this definition, rare diseases are anything but rare. Rare Disease Day provides a yearly opportunity to raise awareness of the 300 million people worldwide living with rare diseases. Learn more about specific initiatives you and your family can join to help spread the word about APS Type 1.
Advocacy is challenging. It pushes us beyond our comfort zones. Advocating for a rare disease is even more demanding because few people are familiar with the conditions we aim to raise awareness about. Rare Disease Day offers a perfect opportunity to start the conversation.
While everyone’s journey is unique, some patients and families find it empowering to talk about APS Type 1 with their community. Sharing your story gives you control over the narrative. Visit rarediseaseday.org to explore an inspiring collection of personal rare disease stories and upload your own.
Starting in January, we’ll send several emails leading up to Rare Disease Day, highlighting specific actions you and your family can take to spread the word about living with APS Type 1. These will include:
- Materials that students can use to organize a Rare Disease Day event in their class or at their school. Rarediseaseday.org also has resources about living with a rare disease for students of all ages to share at school or with friends.
- A decision tree you can give to medical providers to share with other physicians to aid in diagnosing APS Type I.
- A toolkit for hosting a dinner (you pick the size) at your home to raise awareness and funds for APS Type 1.
- Suggestions for “Striping Out” in honor of the rare disease zebra mascot, with social media banners, printable lawn signs, and home light displays of the Rare Disease Day colors.
Join us, and millions worldwide, in celebrating our strength and resilience on Rare Disease Day 2025.