Cystinosis Awareness Day 2026
May 7
This year marks the 9th Annual Cystinosis Awareness Day.
Inspired by the 57kb deletion in the CTNS gene, the most common cause of nephropathic cystinosis, the day has grown into a global moment of recognition, awareness, and action.
Join us in answering…
What’s your 57?
Ways to participate:
57 voices
What’s your 57? The reason that keeps you going. The moment that shaped you. The “why” behind your connection to the cystinosis community. We’re inviting 57 people from around the world to be featured in the awareness campaign. Amplify your voice here.
Show your 57
Change your social media profile image(s) to support Cystinosis Awareness Day. Download it here.
Get creative
Turn your “57” into a work of art; music, drawing, painting, photography, dance, theater, or crocheting, writing etc.
Give back
Ask 57 friends and family members to donate to the CRN using our secure, tax-deductible form.
Explain it
Create a short, simplistic explanation of cystinosis to bring up in conversation. Or you could text, email or call 5-7 people to talk about why awareness day is important to you.
Reflect
Journal your journey. Write 57 words about your relationship with cystinosis, or keep it simple and jot down how you are feeling today (share or keep it to yourself).
Stay informed
Spend 57 minutes reading the latest on cystinosis. Share one takeaway.
Acts of kindness
Complete 5-7 small acts. Every action makes a difference!
Connect
Located near Jacksonville, Florida? Join us in-person on May 2 to celebrate the day with our cystinosis families.
Simple actions can help others better understand this disease, drive earlier diagnosis and better care, generate stronger support, all in hopes of improving longterm outcomes. How will you choose to honor this momentous occasion? Share with us at info@cystinosis.org or tag us on social media.
We look forward to see how you choose to honor our 2,000+ warriors this Cystinosis Awareness Day.
Assets ready to download
- Cystinosis Awareness Day flyer
- Social media profile image
