Get Involved

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

Join The Cystinosis Research Network (CRN) and become part of a global network of caring families, concerned individuals and healthcare professionals working together in the fight against cystinosis. The Cystinosis Research Network’s vision is the discovery of improved treatments and ultimately a cure for cystinosis. The Cystinosis Research Network (CRN) is a volunteer, non-profit organization dedicated to advocating and providing financial support for research, providing family assistance and educating the public and medical communities about cystinosis.  The CRN funds research and programs primarily through donations from the public, grassroots fundraising events and grants.

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CRN provides outreach and access to resources. We take great pride in carrying out our motto:

“Dedicated to a Cure.  Committed to our Community” …whether you are …

  • A Parent who needs critical resource information, support services or help in sharing the challenges of cystinosis to those who serve your child.
  • An Adult with cystinosis interested in information regarding medical and social issues that are specifically geared for adults.
  • A Relative or a Friend who wants to increase their understanding of cystinosis and find out how you can help out or become involved.
  • A Physician, Social Worker, Educator or other Professional who makes a difference in the life of a family affected by cystinosis, and want to have access to critical information to better serve your patient, student or client.

Joining the Cystinosis Research Network enables you to:

  • Receive all the latest cystinosis information through our countless resources, including the biannual CRN Newsletter, our very informative web page www.cystinosis.org, the popular online Cystinosis Support Group, and our toll free number (1-866-276-3669)
  • Attend the CRN Family Conference with other cystinosis families to exchange knowledge and create friendships. Also, find out the latest discoveries about cystinosis from the medical professionals.
  • Let your voice be heard by legislators and policymakers who need to know why cystinosis (and other rare diseases) are important issues to you.
  • Have access to the Cystinosis Research Network’s representatives in the areas that are most relevant at any given time to you or your loved one affected by Cystinosis.

Join the Cystinosis Research Network today!
Click here to signup and pay online
Click Here to download and mail the CRN Membership Form

Please join a Cystinosis Research Network (CRN) Committee and make a difference in the quality of life of children, adults, and families affected by cystinosis. Many opportunities are available:

  • Family Support
  • Research
  • Development
  • Finance
  • Education and Awareness
  • Membership
  • Professional and Medical Advisory

For more information, please call CRN at 866-276-3669 or email at This email address is being protected from spambots. You need JavaScript enabled to view it. This email address is being protected from spambots. You need JavaScript enabled to view it. . Thank you!