Patient Support Specialist

PTC Therapeutics is a global commercial biopharmaceutical company. For over 25 years our team has been deeply committed to a unified purpose: Extending life’s moments for children and adults living with a rare disease.

At PTC, we cultivate an inclusive culture where everyone feels valued, respected, and empowered. We welcome candidates from all backgrounds to join our team , fostering a strong sense of belonging.

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Job Description Summary:
The Patient Support Specialist at PTC supports rare disease patients (e.g., PKU) through focused case management for pediatric patients and their caregivers, as well as adult patients enrolled in PTC Cares. This role supports coordination of therapy initiation, managing patient-level logistical needs in collaboration with the Sales, Patient Engagement, and Case Manager teams, promoting long-term treatment adherence, and navigating life-stage transitions (e.g., childhood to adolescence, transition to adult care).

The Patient Support Specialist also serves as a PKU subject matter resource for the Patient Services team to promote consistent, high-quality patient support. This role does not provide medical advice but focuses on product training, adherence, and logistical responsibilities using approved materials.

The Patient Success Liaison supports adherence to relevant regulatory and compliance requirements and company Standard Operating Procedures (SOPs) as appropriate.

. Job Description:
Responsibilities:

- Educate patients and caregivers on disease state, medication safety, administration and storage via phone/video and other approved channels.

- Work hand-in-hand with Sales, Patient Engagement, and Case Manager teams with the assigned Case Manager, Patient Engagement and Sales to coordinate therapy initiation and ongoing patient support, align on patient-level logistical needs, and ensure a seamless experience for patients enrolled in PTC Cares.

- Utilizes resources to empower patients and improve treatment compliance.

- Identify and address adherence barriers (diet fatigue, taste preferences, social pressure, school/work constraints, access challenges, psychosocial factors).

- Provide proactive follow-up based on program triggers, risk, missed check-ins, or patient-reported concerns.

- Support transition milestones (e.g., increasing adolescent independence, transition to adult care teams, major life events that affect dietary adherence).

- Coordinate with caregivers and healthcare providers, as appropriate and permitted, to reinforce plans and continuity of care.

- Escalate urgent concerns, clinical red flags, or safety issues per program guidance and required reporting procedures.

- Act as the PKU resource for Patient Services staff—answer questions, support complex cases, and provide coaching on patient communication approaches.

- Contribute to the development and refinement of PKU-specific workflows, scripts, and patient education tools.

- Share themes and insights with leadership (e.g., common adherence barriers by age group) to improve services and patient experience.

- Document all patient interactions accurately and in a timely manner in approved systems.

- Maintain compliance with HIPAA/privacy requirements and PTC Cares program standards.

- Participate in quality improvement initiatives and support adherence/outcome tracking as defined by the program.

Qualifications:

- Bachelor’s Degree and 5+ years of clinical nutrition/nursing and/or patient counseling experience with demonstrated adherence/behavior change support skills. Active, Dietitian/Nursing license and/or Master’s degree preferred.

- Metabolic Dietician or Pediatric Dietician and/or nursing expertise with practical, real-world application across life stages.

- Ability to drive sustained adherence through individualized coaching and barrier resolution.

- High-quality documentation, organization, and follow-through.

- Collab