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

Good Intentions 3D Photo

     Lundbeck - Rare Disease Partner
     
Jan 2010  

CRN Sponsors Cystinosis Symposium at International Pediatric Nephrology Association Meeting to be held August 31, 2010

CRN Partners with NORD for Rare Diseases Day 2010

     
Nov 2009   International Cystinosis Conference in Italy Sept 24-26, 2010
     
Sept 2009   CRN Funds 3 New Research Projects
     
Feb 2009  

Fellowship Available

CRN / NIH Seeks Fellowship Applicants

     
Jan 2009  

2009 Summer Camp for Kids with Kidney Disease

     
Dec 2008
  Metabolic Outreach Service
Tufts Medical Center Outreach Center looking for patient volunteers to teach doctors about cystinosis

 

Nov 2008   Volunteers Needed
CRN Patient Volunteer Listing

 

Sept 2008   2008 Board Members
CRN Announces New Board Members
   
NORD Membership

CRN Becomes National NORD Member
Featured in NORD Newsletter