Cystinosis Research Network

July 2010

Kellen Binger - Immeasurable Gift: A 2nd Chance at Life

Marybeth Krummenaker named NORD Advocacy Committee Chair

The Cystinosis Patient Survey

Please help the cystinosis community by answering a few brief questions.

As a rare disease, cystinosis and the needs of its community can be a challenge. For this reason, we are continuing our efforts to better understand and address the challenges facing our patient community.

If you are a person with cystinosis or parent of a cystinosis patient, please take a few minutes to complete this important survey by CLICKING HERE.

Only with this information can we ensure that people affected by cystinosis are getting access to the right tools and resources. All of your personal and contact information will remain confidential.

Thank you in advance for your support. If you have any questions, please contact Kelly Butterworth at 202.591.4052 or Kelly@JonesPA.com.

The Cystinosis Patient Survey is made possible by support from Sigma-Tau Pharmaceuticals.

June 2010

Request for Contact Info /Cystinosis Patient Survey Coming Soon

Click here to update your Contact Info for CRN

CRN Awards NIH Cystinosis Fellowship

2011 CRN Family Conference Set for July 14-16 in San Francisco

May 2010

Sigma-Tau Pharmaceuticals Cysteamine Eye Drop NDA Accepted for Filing

Mar 2010

Growth Hormone in Cystinosis - by Dr. Craig Langman

Feb 2010

Give Raptor Input For Delayed-Release Cysteamine

Feb 2010

Good Intentions - CRN Press Release and Photo
Good Intentions - Feature Film Gives Back to the Cystinosis Research Network