Get Involved

Get connected! Stay informed! Together we can find a cure!

Becoming a more active member in the cystinosis community can be very rewarding. The CRN is partners with a global network of caring families, concerned individuals and healthcare professionals working together in the fight against cystinosis. Here are some suggestions on how you can help support our vision to discover improved treatments and ultimately a cure.

  • Raise Cystinosis Awareness – Visit our Rare Disease Day page, increase organization visibility by wearing CRN merchandise from our store, share cystinosis information with family and friends and across your social networks

  • Become a Cystinosis Day Ambassador – With our guidance, U.S. families/individuals lobby state representatives to declare May 7th National Cystinosis Day (5/7 represents the most common cystinosis mutation: 57-kb deletion)

  • Share Your Story – Sharing your cystinosis and rare disease experiences can help others through their journey

  • Advocate for Cystinosis – This can be daily; at school, with your healthcare team, at work, or on a larger level representing the cystinosis community at conferences

  • Make Connections – Attend a cystinosis conference or regional event to meet others

  • Donate Your Talent – Always developing new programs, donating your skill could be a great asset! Examples include but are not limited to: photography, writing, editing, graphic art

  • Start a Fundraiser – Let Jose navigate you through your first fundraiser and determine what is best based on location, your passion and your availability

  • Volunteer Your Time – 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

  • Shop – Use 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 This email address is being protected from spambots. You need JavaScript enabled to view it. to learn more about these opportunities. You can also call 866-276-3669 or email This email address is being protected from spambots. You need JavaScript enabled to view it..

Thank you for your interest!


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