PKU Patient Support & Adherence Specialist

PTC Therapeutics, Inc.; California (MO); On-site; USD 97,000 - 122,000; Full time

Job summary

PTC Therapeutics, Inc. is seeking a Patient Support Specialist to assist rare disease patients (PKU) and caregivers with education, adherence, and logistics across pediatric and adult populations.

You will coordinate initiation and ongoing support with cross‑functional teams, promote treatment adherence, and serve as a PKU subject matter resource while ensuring HIPAA and SOP compliance.

Qualifications

• Bachelor’s Degree with 5+ years of clinical nutrition/nursing or patient counseling.
• Active Dietitian or Nursing license and/or Master’s degree preferred.
• Experience with PKU or metabolic disorders is a plus.

Responsibilities

• Educate patients and caregivers on disease state, medication safety, administration and storage via phone/video.
• Coordinate therapy initiation and ongoing patient support with Sales, Patient Engagement, and Case Manager teams.
• Identify and address adherence barriers to improve treatment compliance.
• Provide proactive follow-up based on program triggers and patient-reported concerns.
• Support transition milestones from childhood to adult care teams.
• Escalate urgent concerns and document interactions per SOPs and HIPAA.
• Act as PKU resource for Patient Services staff and coach on patient communication.
• Contribute to PKU workflows, scripts, and patient education tools.
• Share insights with leadership to improve services and patient experience.
• Document patient interactions in approved systems.
• Maintain HIPAA/privacy compliance and track adherence/outcome metrics.

Skills

Adherence coaching

Patient education

Case management

Communication skills

Documentation

Logistics management

HIPAA compliance

Education

Bachelor’s Degree

Active Dietitian/Nursing license

Master’s degree preferred

Metabolic Dietitian/Pediatric Dietitian

Tools

EMR/CRM systems

Microsoft Office

Job description

PTC Therapeutics, Inc. is seeking a Patient Support Specialist to assist rare disease patients (PKU) and caregivers with education, adherence, and logistics across pediatric and adult populations.

You will coordinate initiation and ongoing support with cross‑functional teams, promote treatment adherence, and serve as a PKU subject matter resource while ensuring HIPAA and SOP compliance.