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Cystinosis Warrior Impact Program

In honor of 5th Annual Cystinosis Awareness Day a new global initiative has been announced: the Cystinosis Warrior Impact...

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An Open Letter to the Cystinosis Community

Interim CRN President, Tim Wyman, has written an open letter to the cystinosis community. You can read it here.

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For Cystinosis Families: Free Needle Poke Wellness Kits

Angel Aid is currently providing free trauma-less needle poke wellness kits for the cystinosis community. Their “Buzzy” kits were...

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New Details Announced: CYSTADROPS U.S. Website Launched

Recordati Rare Diseases Inc., the makers of CYSTADROPS, launched a website to support the launch of the eye treatment...

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Playback – 2020 International Cystinosis Family Conference 

In April, the Cystinosis Network Europe adapted their international conference to the restrictions set forth by COVID-19. The result...

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Advocating For Our Daughter’s Rare Disease

Advocating for rare disease sometimes feels like fighting an uphill battle. Living with cystinosis means you are 1 in...

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2021 Family Conference Location

The CRN 2021 Family Conference will be hosted in Nashville, Tennessee (U.S). Please visit our events page for details...

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Rare Disease Day 2020

How will you honor the “rarest” day of the year? Check out our cystinosis awareness giveaway. Sign up and...

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Little But Fierce

When it comes to Elle and cystinosis, “We continue to take each day dose by dose.” Hear more from...

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Each Year is a Gift by Jenn Loglisci

I do not have one story or just one person I can point out as a #GreatGiver. I am...

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