Rare Disease Day 2025

Rare Disease Day is February 28, 2025.

It is an opportunity to raise awareness and generate change for the 300 million people worldwide living with a rare disease, their families and carers. Rare Disease Day Official launched a video to support the cause which you can view here.

The 2025 theme: More than you can image. 

We are asking the cystinosis community to raise your voice and provide a glimpse into what life is like living with a rare disease. Our goal is to fill in the blank below and share with the broader community via social media and/or the CRN newsletter.

• Living with cystinosis is more ___________ than you can imagine. 
  Send in your answer along with a photo or create a video expressing your thoughts. Email to info@cystinosis.org.

Other ways to be a part of Rare Disease Day 2025

• • US Residents – EveryLife Foundation for Rare Diseases created a petition to support steady and robust federal agency leadership, federal biomedical research funding, and public health agency support.
    If this cause resonates with you, lend your voice by signing and sharing here.
  • On February 28, landmarks around the world will light up in Rare Disease Day colors. If you can, visit a lit-up landmark near you and take a photo! No landmark nearby? Light up your home with Rare Disease Day colors—purple, pink, green, and blue—and share a photo.
  • Share a Fact About Cystinosis. Raise awareness by posting a fact about cystinosis on social media or have a discussion within your circle of family, friends, schools, places of worship, etc. Not sure what to share? Visit our education section.
  • Connect and Advocate. Share your experience with cystinosis in an email, blog, or social post. Tag your representatives and ask them to support rare disease research and policies.
  • Get Creative. Write a poem, draw a picture, or create something that represents your cystinosis journey. Share it or send to us to showcase.

No matter how you choose to participate, your voice makes a difference!