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Owen, individual living with PKU.

See how we can help

This short video shows how your dedicated Case Manager will work with your insurance company and your healthcare provider to help you get started on treatment and set you up for long-term success.

Play video: What is PTC Cares?

Find a Case Manager

Connect with a Case Manager by entering your prescriber’s ZIP code. Then, call us at this number or complete the PKU Patient Consent Form to get connected with your dedicated Case Manager.

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We’re always ready to help!

1‑844‑4PTC‑CARES (1‑844‑478‑2227)

M – F, 8 AM – 6 PM ET

Financial assistance

We’re always working to support your access to treatment. Insurance benefits can vary widely and as a result, sometimes medications can be costly. That’s why we explore every available option to help minimize the cost to you. After your insurance evaluation is complete, we’ll call to go over any PTC financial assistance programs that may be available to your family, if eligible.

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The Copay Assistance Program*† may help qualified families who have commercial insurance get help covering out-of-pocket costs associated with treatment.

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The Bridge Program* may provide patients who are actively enrolled in PTC Cares a temporary supply of PTC medication free of charge while they are waiting for verification of insurance coverage.

The Patient Assistance Program (PAP) may be available to those patients without insurance, who are eligible, get access to treatment. Patients must be able to financially qualify for the assistance.

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SephienceTM Start Program is for eligible patients to quickly get started on the new treatment. For a full list of qualifications speak with your healthcare provider and PTC case manager.

If you need additional financial support, we’ll do our best to connect you to other charitable patient foundations that may be able to help.

  • * Low to no out-of-pocket costs for most patients who qualify.
  • †Not valid for prescriptions eligible to be reimbursed, in whole or in part, by Medicaid or Medicare (including Medicare Part D), or where prohibited by law.

Specialty pharmacy

When it comes to medication, we’re determined to deliver. Like many other therapies for rare diseases, medications from PTC Therapeutics are distributed through specialty pharmacies—pharmacies that are specially trained to handle them and can deliver them directly to your door. Specialty pharmacies can provide services, information, and support that regular pharmacies don’t offer. We’ll work closely with your specialty pharmacy throughout your treatment to coordinate the delivery of your medication.

Together, your specialty pharmacy and Case Manager will:

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Help you schedule deliveries to make sure your medication is delivered where and when you need it.

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Provide refill reminders to let you know when your refills are due.

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You will also receive a call from the specialty pharmacy each month to schedule your shipment. It’s very important to answer these calls, because your medication can’t be shipped without your confirmation and may not arrive on time if you miss a call.

We’ll always be available to answer any questions you may have about working with your specialty pharmacy. We’re just a phone call away. Call us at 1‑844‑4PTC‑CARES (1-844-478-2227), M – F, 8 AM – 6 PM ET. We’re ready to help in any way we can.

Beyond treatment support

Get the personal attention you deserve. We’re committed to connecting you to support that goes beyond treatment support. Together, with our Patient Engagement partners, PTC can help connect you with the right information when you need it.

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Practical support: Not sure where to start when looking for a specialist in your area? Our Patient Engagement team can connect you to the PKU community within your region so they can help you find the information and resources you need.

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Emotional support: Looking to connect with other families living with PKU? Your dedicated Case Manager can connect you to a network of 
support, including our Patient Engagement team, or patient advocacy groups. We’re just a phone call away and ready to listen. Just call us at 1-844-4PTC-CARES (1-844-478-2227), M – F, 8 AM – 6 PM ET—even if you just want to talk when you’re having a particularly hard day.

Patient advocacy groups

Connect with the community. Patient advocacy groups provide education, resources, and support to members of the PKU community. The groups listed below are just a few of many organizations. Talk to your Case Manager for more information about advocacy groups and how they might be able to help your family.

The National PKU Alliance provides education and support for people living with PKU, as well as advocates on issues such as access to medical food and formula and newborn screening initiatives.
flok is an app and research platform designed to improve the care and treatment of inherited metabolic disorders, including PKU.

Resources

Prescription Start Form Thumbnail

Prescription Start Form

Treatment begins with the Prescription Start Form that you and your healthcare provider fill out and your provider faxes to us.

Insurance Glossary

Insurance Glossary

A glossary of commonly used terms that can help prepare you for important insurance-related conversations.

Download
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We are always ready to help

1-844-4PTC-CARES (1-844-478-2227)
M – F, 8 AM – 6 PM ET

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Frequently asked questions

Get answers to commonly asked questions about insurance, affordability, or getting medication.

View FAQs
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About us

Find out more about who we are and how we help families living with rare diseases.

See how we help