Cysteamine Eye Drops

“Living with Cystinosis: A Closer Look”. This video is now available at http://www.youtube.com/watch?v=eT8DB34Ktnk and offers information about the symptoms, impact and management of the ocular effects of cystinosis. In addition, it provides valuable first-hand insights for people with cystinosis about how to fit the condition into their daily lives. Sigma-Tau Pharmaceuticals partnered with CRN in its creation.

Cystaran Eye Drops Now Available

Sigma-Tau Pharmaceuticals Launches Cystaran Today

SIGMA-TAU PHARMACEUTICALS LAUNCHES CYSTARAN™ FOR THE TREATMENT OF CORNEAL CYSTINE CRYSTAL ACCUMULATION IN PATIENTS WITH CYSTINOSIS

GAITHERSBURG, MD, May 1, 2013-Sigma-Tau Pharmaceuticals, Inc. (Sigma-Tau), a part of the Sigma-Tau Group Rare Disease Franchise, announced today the availability of CYSTARAN™ (cysteamine ophthalmic solution) 0.44%, the first and only FDA-approved therapy for the treatment of corneal cystine crystal accumulation in patients with cystinosis. Sigma-Tau developed CYSTARAN in partnership with the National Institutes of Health (NIH) and in cooperation with the Cystinosis Foundation, the Cystinosis Research Foundation, and the Cystinosis Research Network. The U.S. Food and Drug Administration (FDA) approved CYSTARAN in October 2012, and the product has also been granted Orphan Drug status.

CYSTARAN™ Hotline

1-877-534-9627
The CYSTARAN™ Hotline is available to patients, caregivers and physicians in the U.S.
Order Mon. - Fri., 8:00 a.m. - 8:00 p.m. Eastern
Specialty-trained pharmacists and registered nurses available 24 hours a day, 7 days a week.
CYSTARAN is dispensed solely by Walgreens Specialty Pharmacy.

"The CYSTARAN launch marks an important milestone for Sigma-Tau and further demonstrates our proven ability to develop and deliver novel therapies for patients suffering from a wide range of rare diseases," noted Dave Lemus, Chief Executive Officer of Sigma-Tau. "Sigma-Tau is committed to ensuring comprehensive access for all cystinosis patients with corneal crystal accumulation, and we feel especially privileged to be able to offer this critical new therapy which will make a positive impact on these patients' daily lives."

"For the hundreds of children and adults in the United States who suffer from corneal cystine crystal accumulation as a result of cystinosis, the commercial availability of CYSTARAN provides access to a critically needed therapy," commented Craig B. Langman, MD, the Isaac A. Abt, MD Professor of Kidney Diseases and Head of Kidney Diseases at the Ann & Robert H. Lurie Children's Hospital of Chicago and the Feinberg School of Medicine of Northwestern University. "We need to make sure that physicians and patients managing cystinosis understand the risk of eye complications and are aware of the availability of an FDA-approved therapy with documented safety and effectiveness."

CYSTARAN is available as a sterile ophthalmic solution containing 6.5 mg/mL of cysteamine hydrochloride equivalent to 4.4 mg/mL of cysteamine (0.44%). For full prescribing information for CYSTARAN, see www.cystaran.com.

Safety: The most frequently reported ocular adverse reactions occurring in ≥10% of patients were sensitivity to light, redness, eye pain/irritation, headache, and visual field defects.

About Cystinosis

Cystinosis, a genetic disease which affects approximately 2,000 individuals worldwide, is a rare, life-threatening condition in which the body accumulates the amino acid cystine (a building block of proteins) within cells. Excess cystine leads to formation of crystals that can build up and damage cells throughout the body. Cystinosis slowly destroys numerous vital organs including the kidneys, liver, eyes, muscles and the brain. Other complications of cystinosis include muscle weakness, diabetes, hypothyroidism, difficulty in swallowing and rickets. Corneal cystine accumulation can lead to ocular complications such as squinting, foreign body sensations, changes in visual acuity, corneal haziness and photophobia (i.e., sensitivity to light). The clinical safety and efficacy of CYSTARAN has been evaluated in controlled clinical trials conducted by the NIH in approximately 300 patients.

About Sigma-Tau Pharmaceuticals, Inc

Sigma-Tau Pharmaceuticals, Inc. is a U.S.-based, wholly owned subsidiary of the Sigma-Tau Group, and is dedicated to the global development and commercialization of medicines for patients with rare diseases. Sigma-Tau Pharmaceuticals, Inc. is based in Gaithersburg, Maryland. Since 1989, the company' s products have been focused on kidney disease, certain genetic disorders and cancers. With more than 7,000 identified rare diseases that affect approximately 30 million patients in the U.S. alone, Sigma-Tau places its considerable scientific resources behind the development and commercialization of compounds that benefit the few. The company has a substantial development program focused on transplant, cancer, inherited genetic disorders, malaria, and other areas of unmet medical need. For more information about the company, visit www.sigmatau.com.

Sigma-Tau Contact:

Lesli King
Senior Manager, Patient Affairs
Sigma-Tau Pharmaceuticals, Inc
Phone: 301-670-5450
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Paula Schwartz
Senior Vice President
Rx Communications Group
Phone: 917-322-2216
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Additional Information

Cystaran Ordering Information
Cystaran Enrollment Form
Cystaran Prescribing Information

crn eyedrops

National Institutes of Health (NIH)Eye Clinic

Alana Temple, RN
Clinical Trials Coordinator
Phone: (301) 402-1369
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Photo Gallery

2015 Conference

2013 Conference

You can view additional photos from the Conference taken by Sarah Dawson Photography at her website here. The password to view the photos is crn2013.

Thursday Reception

Friday

Saturday

2011 Conference

2009 Conference

2007 Conference

2005 Conference

Scholarships

Each year the Cystinosis Research Network (CRN) provides scholarship opportunities for students currently enrolled in or preparing to begin an accredited collegiate or vocational program. Financial assistance of $1,000 will be awarded to one student diagnosed with Cystinosis and $1,000 to a student with a sibling diagnosed with Cystinosis.

Further information on the application requirements are provided below. The deadline is August 15, 2017. For questions, contact Terri Schleuder at This email address is being protected from spambots. You need JavaScript enabled to view it..

2017 CRN Scholarship for an Individual with Cystinosis Instructions

APPLICATION

2017 CRN Sierra Woodward Sibling Scholarship Instructions

APPLICATION

 

scholarships 83116

Congratulations to the past CRN academic scholarship recipients!

CRN Individual Scholarship Recipients

2016
Shea Hammond
William Patterson
2015
Garrett Thomas
2013
Elizabeth Patterson
2012
Devin Adorjan
2011
Katie Ahnen
Mikaela Gard
Weston Tschannen
2009
Shannon Keizer
2007
Steve Schleuder
2006
Kelly Bryant

CRN Sierra Woodward Sibling Scholarship Recipients

2016
Alex Greeley
2015
Kasey Hohl
2014
Caroline Larimore
Jack Wyman
2013
Kole Binger
2012
Matthew Ahnen
2011
William Tschannen
2010
Nikolaus Gard
Laurin Friend
2008
Ashley Shaw
2007
Allison Tschannen
Kelly McCalla
2005
Tahnie Woodward
Allison Abedini

Families In Your Area

Looking for other cystinosis families in your area? With cystinosis being a rare disease, the members of our community are spread all over the world. Sometimes we tend to feel isolated and alone in this journey. If you are interested in networking with other cystinosis families in your area, please complete the form below and someone will contact you.

  1. First Name*
    Please provide your first name
  2. Last Name*
    Please provide your last name
  3. City
    Invalid Input
  4. Zip Code
    Invalid Input
  5. State/Province
    Invalid Input
  6. Country
    Invalid Input
  7. Phone
    Invalid Input
  8. Email*
    Please provide your email
  9. Person With Cystinosis
    Invalid Input
  10. Age
    Invalid Input

Support Groups

The Support Groups are an easy way to communicate with the cystinosis community using Yahoo Groups.  Yahoo Groups are a way of communicating by email to many people that belong to the same group. CRNSupportGroup and Cystinosisteensupport are the two cystinosis Yahoo Groups affiliated with the Cystinosis Research Network.

crn groups

Cystinosis Support List

For parents, affected adults, caregivers, family, and friends. We also welcome researchers and medical professionals who are interested in cystinosis. This is the place to discuss the various aspects of cystinosis, and how it affects our lives, how we cope with it, vent our frustrations, share our fears, our hopes, and dreams.

Cystinosis Teen Support List

For teens with cystinosis and teenage siblings of children and adults with cystinosis. Connect with other teenagers who are dealing with similar issues. The posts include questions, concerns, ideas and supportive sharing.

 

If you would like to subscribe to either of these lists please fill out the form below. We require you give your name and address to avoid subscribing salespeople and other undesirables to the lists. Your information is kept confidential.

  1. First Name*
    Please provide your first name
  2. Last Name*
    Please provide your last name
  3. Address
    Invalid Input
  4. City
    Invalid Input
  5. Zip
    Invalid Input
  6. Country
    Invalid Input
  7. State/Province
    Invalid Input
  8. Phone
    Invalid Input
  9. Fax
    Invalid Input
  10. Email*
    Please provide your email
  11. Invalid Input
  12. Enter Code*
    Enter Code Invalid Input

Subcategories

logo

CRN Newsletter Signup - Popup
  1. Stay up-to-date with the latest information from the Cystinosis Research Network by joining our email list.

  2. First Name
    Invalid Input
  3. Last Name
    Invalid Input
  4. You must enter a valid email.