- This event has passed.
Rare Disease Day 2026
February 28
Taking place on the last day of February, Rare Disease Day is a global movement which aims to promote equity in social opportunities, healthcare, and access to diagnosis and therapies for individuals living with rare diseases.
If you are looking for cystinosis awareness opportunities, you’ve come to the right place. Here are some ideas:
- Share Your Story
Through partnership with Everylife Foundation, share your experience focusing on this question: How has rare disease has affected your and your family’s lives? Submit online here.
- Faces of Rare
Similar to the option above, join NORD in celebrating the “Faces of Rare.” Providing a photo and a small glimpse into your rare disease story on their website.
- Rare Disease Week in Washington, D.C.
Advocate during Rare Disease Week on Capitol Hill (email info@cystinosis.org if interested in sponsorship)
- Local Rare Disease Day Events
Can’t make it to Washington, D.C.? Do a quick search for Rare Disease Day events near you. Check out NORD’s list here.
- Call for Rare Youth Leaders
Teens and young adults looking to take a rare leadership role, contact the CRN before March 8th. Opportunities open to those with a personal connection to rare ages 18-30. Email info@cystinosis.org
- Why should I care about Rare Disease Day?
Learn about Rare Disease Day and sharing the importance of this event with friends, family and your extended networks. Access the official Rare Disease Day info pack and video today
