Rare Disease Patient Engagement Lead

PTC Therapeutics, Inc.; Indiana (PA); On-site; USD 120,000 - 140,000; Full time

Benefits offered by this job

Medical, dental, vision

Retirement savings plans

Job summary

PTC Therapeutics, Inc. seeks a field-based Patient Engagement Liaison to connect with rare disease communities, caregivers, and advocacy groups, primarily supporting PKU. You’ll educate, build relationships, and identify resources to remove access barriers for marketed products.

Ideal candidates have a background in healthcare or biotech, a Bachelor’s degree, and at least 5 years of relevant experience. Up to 75% domestic travel and strong collaboration across teams are required.

Qualifications

• Bachelor’s degree in a related field; 5+ years in pharma/biotech or advocacy.
• Experience supporting rare disease communities and caregivers.
• Ability to build and maintain internal/external relationships with stakeholders.

Responsibilities

• Engage with rare disease communities and patient advocacy orgs to capture insights.
• Collaborate with internal teams to educate and strengthen relationships with patients and caregivers.
• Help remove access barriers to therapies and support coverage discussions when appropriate.
• Build patient advocacy networks for marketed products and development programs.
• Coordinate with medical, communications, legal and compliance teams to follow guidelines.
• Connect families to resources and develop educational programs for diseases like PKU.
• Support advocacy orgs through shared educational initiatives and programs.
• Work with the community to advocate for access to care and therapies.

Skills

Empathy

Cross-functional collaboration

Verbal communication

Written communication

Relationship building

Analytical thinking

Data entry into CRM

Education

Bachelor’s degree

Tools

Microsoft Office

Zoom

CRM systems

Job description

PTC Therapeutics, Inc. seeks a field-based Patient Engagement Liaison to connect with rare disease communities, caregivers, and advocacy groups, primarily supporting PKU. You’ll educate, build relationships, and identify resources to remove access barriers for marketed products.

Ideal candidates have a background in healthcare or biotech, a Bachelor’s degree, and at least 5 years of relevant experience. Up to 75% domestic travel and strong collaboration across teams are required.