How to Help

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Becoming an active member of the cystinosis community can be very rewarding. The CRN partners with a global network of caring families, concerned individuals and healthcare professionals working together in the fight against cystinosis.

Here are a few suggestions on how to get started:
Advocate – This can be daily; at school, with your healthcare team, at work, or on a larger level representing the cystinosis community at conferences.
Cystinosis Awareness Day Ambassador – Join the task force for the 6th Annual Cystinosis Awareness Day on May 7, 2023
Share Your Story – Help others through their journey by sharing your cystinosis and rare disease experiences. Email
Connect – Attend a cystinosis conference or events to meet others
Lend Your Talent – We are always creating new programs within the community. Donating your skill could be a great asset! Examples include but are not limited to: photography, writing, editing, graphic art
Fundraise – We can help navigate your fundraiser and determine the best plan based on your location, passion and availability. For those on social media, Facebook has made it simple to fundraise by using this link
Volunteer – Join a CRN committee and make a difference in the lives of others impacted by cystinosis. Areas include: Family Support, Research, Development, Finance, Education and Awareness, Membership and Professional and Medical Advisory
Donate Funds – Direct donations help fund research and our mission
Participate – Cystinosis research studies are currently recruiting volunteers. Check out our Participation page to access the latest list
Get Social – Hear from individuals and caregivers living with cystinosis from around the world. Visit our public Facebook page and request access to our private online community. Additional social channels accessible through our website footer icons

Email to learn more or call 847-735-0471.

Thank you for your interest!

"My brother, Glenn, has cystinosis. Seeing how strong he is empowers me. He is the reason charitable causes play such a large part in my life."

-Tori Lynn, cystinosis sibling