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:
Awareness – Show your support by requesting a free cystinosis sticker or temporary tattoo
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 Day Ambassador – Join the task force for the 2nd Annual Cystinosis Awareness Day on May 7, 2019
Share Your Story – Help others through their journey by sharing your cystinosis and rare disease experiences
Connect – Attend a cystinosis conference or events to meet others
Donate 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
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 find a cure
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/or request access to our private online community
Shop – Use smile.amazon.com when shopping through Amazon. By designating the Cystinosis Research Network as your charity of choice, a portion of your purchase could benefit the CRN

Email info@cystinosis.org to learn more or call call 866-276-3669.

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


 

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