Announcements

CYSTARAN™ (cysteamine ophthalmic solution) 0.44% IS MOVING!

Effective July 31, 2014, Walgreens Specialty Pharmacy will be the sole dispensing pharmacy for Cystaran.*

Please call 1-877-534-9627 to speak directly with a Walgreens Specialty Pharmacy Cystaran team member Monday-Friday 8:00AM-8:00PM EST

What you should know about this change:

  • If you have a current prescription with Accredo for Cystaran,  it will automatically transfer to Walgreens Specialty Pharmacy
  • Patient assistance programs will remain intact
  • You can expect a call and a mailed packet from a Cystaran team member  to welcome you to Walgreens Specialty Pharmacy and inform you  of the many services offered at no additional cost
  • There should be no disruption in services

NIH Muscle Wasting in Adults with Cystinosis Study Looking for Participants

Cystinosis Research Network Cystinosis Fellow Dr. Galina Nesterova and coordinator Joy Bryant are starting enrollment in a new research study at the National Institutes of Health. The study will look at whether growth hormone (Humatrope, recombinant human Growth Hormone) may help prevent the loss of muscle that can sometimes occur in people with cystinosis. People with cystinosis are eligible to participate if they age 18 or over, are having muscle problems related to cystinosis, are compliant with their cysteamine therapy, and do not have cancer, high blood pressure, uncontrolled diabetes or significantly impaired kidney function.

The study would last for 2 years and involve 10-12 visits to the NIH. Patients would be assigned to a group that either receives daily growth hormone injections or no treatment for the first year, then would switch to the opposite treatment the second year, so that each participant would receive growth hormone for one year. Several tests will be included such as blood and urine, MRI and DEXA scans and other physician evaluations, all of which will be at no cost to the participant.

If you are interested in finding out more, please contact Joy Bryant at This email address is being protected from spambots. You need JavaScript enabled to view it. or (301) 443-8690 or Dr. Nesterova at This email address is being protected from spambots. You need JavaScript enabled to view it..

CRN 2015 Family Conference to take place in Chicago, IL

The CRN 2015 Family Conference will be held July 16-18, 2015 in Chicago, IL at the Doubletree by Hilton Chicago Magnificent Mile.  You can view information about the hotel by clicking on the Events/Conferences tab.  Registration and reservation information will be made available later this year. 

2014 Spring/Summer Newsletter Released

The CRN 2014 Spring/Summer edition of the newsletter, The Cystinosis Advocate, is available now. Please go to the News/Newsletter link to view it.

Two physicians added to CRN Medical Advisory Board

CRN is  pleased to announce the addition of two physicians to our Medical Advisory Committee, Dr. Rachel Bishop, an ophthalmologist at the National Eye Institute/NIH and Dr. Mihir Thacker, an orthopedic surgeon at Nemours/Alfred I. duPont Hospital for Children in Wilmington, DE.  Dr.Bishop has been involved with the cysteamine eye drop protocol and in the treatment of cystinosis patients at the NIH for some time.  Dr. Thacker is an orthopedic surgeon with an interest in the bone disease consequences of renal disease.  Both of these physicians fill a long time unmet need on our advisory board.  We are grateful for their commitment to the cystinosis community and to the Cystinosis Research Network.

Raptor Scholarship Fund launched in honor of Rare Disease Day

In February, the world celebrates the 7th annual Rare Disease Day, coordinated by EURORDIS (Rare Diseases Europe) and NORD (National Organization for Rare Disorders) with events in over 70 countries.  To help raise awareness of cystinosis as a rare disease, KnowCystinosis and Raptor Pharmaceuticals Inc. would like to offer you a free Rare Disease Day T-shirt. Take a photo of yourself, a friend, or family member wearing the shirt and holding a sign that describes what you want the world to know about cystinosis. Upload your photo with your message to KnowCystinosis.com, and Raptor will donate $10 per e-mail address submission, up to $2,500, to the Raptor Scholarship Fund.

http://knowcystinosis.com/rare-disease-day/

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