On behalf of Leadiant Biosciences, Inc., I’m writing to inform you that we are experiencing a product shortage of Cystaran® (cysteamine ophthalmic solution) 0.44%, of which we hope will be a short-term impact on the patient community. Effective Monday, July 17, Walgreens Specialty Pharmacy will limit fulfillment of all new and refill prescriptions for Cystaran eye drops, to a maximum of two bottles per patient. The goal is to maximize the number of patients who continue to have access to Cystaran while product at Walgreens is limited. This action is necessary to accommodate a product supply interruption that the manufacturer of Cystaran is currently experiencing. We anticipate strong interest in learning more about this issue and concern among the patient and caregiver community. Leadiant understands the cystinosis community relies on Cystaran eye drops and we are committed to working diligently with the manufacturer of Cystaran to determine a solution as soon as possible. We will continue to provide you with updates as new information becomes available.
Director of Marketing Leadiant Biosciences
An Iowa-based non-profit, John Paul II Medical Research Institute (JP2MRI), is looking for Cystinosis patients. Their Rare Disease Program aims to find more treatments and cures for children and patients with rare diseases.
JP2MRI is currently creating a stem cell biobank of patients with rare genetic diseases. They are currently enrolling rare disease patients through a patient registry to ultimately obtain blood or tissue samples. Participation in this research program is entirely voluntary. Your medical information will NOT go to any outside third parties. The patient registry is kept secure and confidential consistent with HIPAA regulations.
JP2MRI is not conducting clinical trials at this time. For more information, visit: www.jp2mri.org
Up to $50,000 in scholarships now available!
Global Genes and Horizon Pharma have partnered to bring the Cystinosis community up to $50,000 in continued education scholarships. This includes but is not limited to: college, graduate school, vocational programs, and enrichment courses.
Individuals living with Cystinosis could qualify for up $5,000 per person in funding. The award can be used for current, future AND previously paid tuition.
Scholarships will be awarded on a rolling basis to those with a genuine need for educational assistance.
Learn more at https://globalgenes.org/HNCS/.