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Patient Direction and Consent for PTC Cares™ Program Participation - PKU

Join PTC Cares today to connect with a dedicated Case Manager who can help make the process of getting treatment easier and support your family throughout the journey. 

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Patient Direction and Consent for PTC Cares™ Program Participation

I understand that I am making this request to hereby direct my healthcare providers, pharmacies, designated treatment centers, and health plans to disclose health information that is related to my use or potential use of SEPHIENCE™ (sepiapterin), including my health conditions, diagnosis and treatment that are related to my use or need for SEPHIENCE™ and any inferences that may be drawn from this information (my “PHI” or “Health Information”) to PTC Therapeutics US, Inc. and its affiliates, agents and contractors (together “PTC”), and to my pharmacies and designated treatment centers.

I understand and agree that the purpose of my request is for PTC and my pharmacies or designated treatment center to use and disclose my PHI—which when used or disclosed by PTC may be considered to be Sensitive Data and/or Consumer Health Data under the laws of some states—to enroll me in the PTC Cares™ Program, which includes the following services, which I’ve requested (the “PTC Cares™ Program” or “Program”): 1) determining my benefit eligibility for SEPHIENCE™; 2) communicating with my healthcare providers and health plans about benefits, coverage and medical care; 3) providing me with support services for SEPHIENCE™; and 4) to contact me, leave me messages, and/or provide me with information or materials related to SEPHIENCE™, my relevant medical conditions, and/or the Program, which may include patient services such as education, training, nurse, and pharmacy support. To the extent permitted by local regulations, the Program may be utilizing artificial intelligence (AI) to increase quality, to expedite the review process, and to improve user experience.

I understand that this is completely voluntary for me and I may decide not to sign this Direction and Consent and that my refusal will have no impact on my eligibility to receive health plan benefits or treatments from my healthcare providers, but I will not have access to support services from the PTC Cares™ Program. I understand that I may terminate or revoke this direction and consent to my healthcare providers to disclose my PHI and/or revoke my consent for the continued collection and processing of my Sensitive Data/Consumer Health Data in connection with the Program, at any time by submitting a written notice to PTC Therapeutics via fax to 1-908-222-7231 or by mail to PTC Therapeutics. Attention: Compliance Officer, PTC Therapeutics, 500 Warren Corporate Center Drive, Warren, NJ 07059. I understand that my termination/revocation will not impact any use or disclosure or other processing activities with my Health Information undertaken by PTC, my pharmacies or designated treatment centers before PTC received my termination/revocation and that my termination/revocation will mean that I will no longer receive support services from the Program. This Direction and Consent will continue until I terminate or it otherwise expires 5 years from the date it is signed by me. I understand that my pharmacy and designated treatment centers may receive remuneration in exchange for the use and sharing of my information pursuant to this Direction and Consent. Information disclosed pursuant to this Direction and Consent may be used or disclosed by the recipient and no longer protected by the federal HIPAA privacy rules. However, the recipients of the Information agree to only use and disclose it as stated in this Direction and Consent or as otherwise allowed or required by law. I understand I can access PTC’s Privacy Statement and Consumer Health Data Statement at PTCBio.com, which also includes a description of my privacy rights. California residents can go here. The personal insurance and information I have provided on this form are complete and accurate to the best of my knowledge. I will update my information promptly if any of the information reflected on this form changes by contacting PTC Cares™ at 1-844-478-2227.

I understand that my act of providing the information and submitting this form is my electronic signature for this request.

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