How has having cystinosis shaped your sense of identity? Karen shares her insightful, heartfelt experience with late onset #cystinosis #CystinosisAware #May7 #LivingRare

What do you wish people knew about #cystinosis? Hannah shares her family’s approach with Henry + Russell #CystinosisAware #May7 #RareDisease

It's Cystinosis Awareness Day + #AskMeAnything with Nicole + Marcus. Onto the dreaded medication topic. Stay tuned for Marcus’ hot take at the end #CystinosisAware #May7 #cystinosis

Thinking of you this Mother’s Day… Those who’ve lost children yearn to become a mom   who’ve lost their mom who’ve stepped up as a mom have strained mom or child relationships who’ve chosen not to become mothers Honoring the many paths and emotions this day carries.

🚨Sign up closes May 16🚨Speak Up, Speak Out workshop for 13–22 y/o takes place at the Grand Rapids CRN Family Conf this July. Travel & lodging scholarships 4 those who qualify. Express yourself + connect with others📩mail [email protected] subj line: SUSO Program #cystinosis

Today we honor the life of cystinosis trailblazer Josh Hotz, who peacefully passed away at age 43. His diagnosis inspired his grandmother, Jean Hobbs Hotz, to create the first known support group for cystinosis families. Sending support to all feeling this loss.

The stem cell trial for #cystinosis (CYStem) – cohort 0 control group is now recruiting! Speak directly with PI Dr. Larry Greenbaum at the CRN Family Conference this July! tinyurl.com/2pj6ztpm or call 404-712-6374 and learn more at tinyurl.com/CystStem

Welcome to the latest edition of The #Cystinosis Advocate Newsletter. A snapshot of where we are and where we are headed as a community tinyurl.com/CystinosisAdv Spot someone you know? Tag or share so others can see their impact too. #CystinosisAdvocate #RareNews

Navigating the Current Together🌊CRN Conference Zoom Call . First-timers, former attendees, or feeling curious, this call is your sneak peek at what’s coming at the GR conference! 🗓 Wednesday, June 4 ⏰ 7 PM ET tinyurl.com/CRNgrandRapids #cystinosis #CRNGrandRapids #RareEvent

Now Enrolling: Swallowing & Muscle Strength study. People ages 16-70 with nephropathic #cystinosis who struggle w swallowing may be eligible. Learn more at tinyurl.com/22ddrkjd and contact Carina Stafstrom at [email protected] or 617-726-5175 for details

U.S. Residents - Real ID Travel Tip Flying within the U.S.? The TSA now requires a REAL ID-compliant driver’s license or another acceptable form of ID (ex: U.S. passport) to board domestic flights. Info avail @ tsa.gov/real-id

Through the questions, the waiting, the wins, and the wipeouts, you are there. You carry so much and still find a way to lift others. That is what makes you legendary. Happy Father’s Day  #RareDad #RareParent #FathersDay

Hotel discount ends Mon, June 16! Book your CRN Family Conference stay at our discounted rate. Call 616-774-2000 & mention the CRN Family Conference room block or visit tinyurl.com/38fxn5xe Conference info: cystinosis.org/news-events/fa… #CRNGrandRapids #cystinosis #gather

*IMPORTANT ANNOUNCEMENT* for those using childcare at the 2025 CRN conference. Families already registered for the conference, please sign up your child(ren) for the childcare program through A Helping Hand at ahelpinghandevents.com ?s email Chelsea @ [email protected]

Cystinosis Warriors x2! 💪 Hear from mom, Hannah, on pg 37 of The Cystinosis Advocate Newsletter: tinyurl.com/CystinosisAdv #cystinosis #RareStorytelling #CystinosisAdvocate

Thanks to the power of the internet connecting #cystinosis families around the world, we bring you Bercan and Süreyya’s journey. Check out page 35 of The Cystinosis Advocate newsletter here: tinyurl.com/CystinosisAdv #CystinosisAdvocate #RareStorytelling #RareDisease

Many in our rare disease community have strong feelings about the implications of this bill and are looking for ways to take action. Please see the info provided by our friends at EveryLife Foundation below #RareDisease #cystinosis #advocacy

➡️Now open⬅️Stem cell and gene therapy trial at Stanford University Cohort 1 includes children 2-5 yo with nephropathic #cystinosis. 💻 tinyurl.com/CysCohort1 📞 650-725-9032 📧 [email protected]

That's a wrap on the CRN 2025 Family Conference! Thanks to all for an unforgettable weekend with the #cystinosis community in Grand Rapids. #CRNGrandRapids #cystinosis #RareDisease Experience Grand Rapids Amway Grand Plaza Cystinosis Ireland

His project was selected as it demonstrates “significant potential to address unmet needs within these rare communities”. For more information on Francesco’s work please visit our Research page on cystinosis.ie/research