Finding help along the cystinosis journey
Horizon Patient Services: Support for you and your family
Horizon Patient Services is dedicated to improving the lives of people living with cystinosis. Your Horizon Patient Services support team includes a dedicated case manager and a patient access manager, who will work closely with you at every step—from disease education to finding sources of financial assistance, if needed.
Case Managers are there with PAMs as your support team to help people taking PROCYSBI feel confident about treatment.
Horizon Patient Services:
- Works with your doctor’s office to get treatment started
- Helps you work with insurance companies
- Helps you stay on treatment through any life changes, such as moving or loss of insurance or employment
- Connects you and your family to others living with cystinosis through communities and more
To get started with Horizon Patient Services, call 855-888-4004
Patient Access Managers: Because it’s personal
Your Patient Access Manager (PAM) is available to support you as a personal resource. Your PAM can help with insurance, travel and financial assistance, life transitions, and helping to link you to the cystinosis community. Your PAM is there for regular talks to answer questions and provide support to you and your family.
Your PAM is there to:
- Guide you along your treatment journey
- Answer your questions
- Connect you with resources
- Help prepare you for treatment
To get in touch with your PAM, just call 844-830-CARE (844-830-2273), and PAMs are also available via email or text, or in person.
Helping with your PROCYSBI prescription
Horizon Patient Services can help get you started on PROCYSBI and will help you connect with the specialty pharmacy. PROCYSBI is only available through a specialty pharmacy and service provider for patients.
Your PROCYSBI prescription is filled and sent to your home through a package delivery service. PAMs can help keep patients on track with refills and answer any questions you have.
Talk to your doctor about a PROCYSBI prescription. The Prescription Enrollment Form found here is required, and your doctor will assist you in filling it out.
To avoid a gap in treatment, plan ahead. Mark your calendar to contact the specialty pharmacy to schedule a timely delivery of your refill.
When to reorder PROCYSBI:
- Before you run out
- Before the discard date written by your pharmacist
When you fill your prescription for PROCYSBI, there should be exactly enough capsules in the bottle to last until your next refill arrives. Do not use expired PROCYSBI.
There are educational programs available about living with cystinosis, where members of the cystinosis community can get together and:
- Learn about cystinosis and treatment with PROCYSBI
- Meet members of the cystinosis community
- Share experiences
- Ask questions
Find a list of Impact Programs taking place in cities across the country this year.
Choose the location that works best for you and your family:
City: Virginia Beach
Cystinosis resources and support
Visit the following for more support: