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
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