Rare Disease Patient Engagement Lead

PTC Therapeutics, Inc; New York (NY); On-site; USD 120,000 - 140,000; Full time

Job summary

PTC Therapeutics, Inc. is seeking a Field-based Patient Engagement Liaison to support rare disease communities, primarily PKU, including patients, caregivers, and advocacy groups across the United States.

The role partners with cross-functional teams to educate and support access to therapies. The position requires up to 75% travel domestically, working within a fast-paced matrixed environment while maintaining confidentiality and relationships with patient groups.

Qualifications

• Bachelor's degree required.
• 5+ years of experience in pharmaceutical, biotechnology, advocacy, medical, or related field.
• Experience supporting people with rare diseases, their caregivers and advocacy organizations.

Responsibilities

• Engages with the rare disease community, including patient advocacy organizations, to better understand the rare experience and incorporate those insights throughout PTC.
• Collaborate internally with other PTC teams to help identify, educate, build, and leverage relationships with those living with rare diseases, their caregivers, and Patient Advocacy Organizations.
• If appropriate, assist the community with resources to help remove access barriers to help gain coverage for marketed products.
• Build patient advocacy and community relationships for currently marketed product disease states and those in development, consistent with applicable regulations.
• Works cross functionally with medical, communications, commercial, legal and compliance colleagues to ensure country specific guidelines, standards and regulations are followed.
• Connect families to Patient Advocacy Organizations and resources.
• Develop, plan and execute educational programs for those living with rare diseases and their caregivers.
• Supports Patient Advocacy Organizations through shared interests in education and programs
• Work with the rare disease community to advocate for access to care and therapies

Skills

Empathy

Healthcare knowledge

Communication

Relationship building

Cross-functional collaboration

CRM data entry

Education

Bachelor's degree

Related clinical or scientific degree

Tools

Microsoft Office

Zoom

Job description

PTC Therapeutics, Inc. is seeking a Field-based Patient Engagement Liaison to support rare disease communities, primarily PKU, including patients, caregivers, and advocacy groups across the United States.

The role partners with cross-functional teams to educate and support access to therapies. The position requires up to 75% travel domestically, working within a fast-paced matrixed environment while maintaining confidentiality and relationships with patient groups.