The Cystinosis Research Network
The Cystinosis Research Network is an all-volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about Cystinosis. They are a private, nonprofit 501(c)(3) corporation, whose vision is the acceleration of the discovery of a cure, development of improved treatments and enhancement of quality of life for those with Cystinosis.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Connect With The Cystinosis Research Network
Patient Worthy Posts on Cystinosis
According to a story from Inside Philanthropy, a recent case study was conducted in order to determine the main sources of funding for rare disease
Another article previously published under “Featured Adult: Rebekah Palmer’s Story” in The Cystinosis Advocate/ Volume 10, Issue 1/ Spring and Summer 2017: I feel an obstacle
Jim and Melea Martin are Outreach Partners with Future by Design, a family support group organized by the Cystinosis Research Network. Melea has cystinosis and
Dad Plans to Promote Awareness About Cystinosis, His Daughter’s Rare Disease as Father’s Day Approaches
According to a story from CBS News, Clay Emerson, from New Jersey, is hoping to use Father’s Day in order to raise awareness about his
To read part one of this story on cystinosis, click here. Briana and Ashley are two adult women from opposite regions in the United States.