The Director of Patient Advocacy, Rare Pediatric Diseases is focused on improving the lives of patients, their caregivers and families. This position serves as and important face of Passage Bio to rare disease pediatric patient advocacy organizations and professional medical associations. Responsible to implement and lead patient and professional advocacy programs in rare pediatric diseases. Responsible for contributing to the company’s positioning as the preferred partner for influential global patient and professional organizations within rare pediatric diseases. This position will be responsible for the development of advocacy programming within identified rare pediatric diseases and will contribute to newborn screening policy objectives. This position will report to the Vice President, Patient Engagement & Market Access
These may include but are not limited to:
- Serve as day to day contact to build and maintain collaborative partnerships with key patient advocacy and professional medical associations and work to prioritize the organizations with which to partner within rare pediatric diseases
- Accelerate advocacy relations with key stakeholders; Based on a clear understanding of and empathy for the patient experience, design and create processes, systems, solutions, and tools that will contribute to the effectiveness and success of the patient advocacy plans
- Develop overall advocacy programming and support as it relates to GM1 and Krabbe Diseases. Additionally, develop tactics to support education on our therapies in development and platform through effective advocacy relations
- Proactively and on an ongoing basis advocate Passage priorities and objectives with senior leadership and opinion leaders at targeted associations with direct one-on-one meetings and participation in industry focused society boards/committees
- Participate in product planning process and team meetings to contribute to one-year and multiple-year operating plans related to advocacy opportunities for GM1, and Krabbe disease.
- Provide support to cross functional departments including regulatory affairs, medical affairs, government affairs, commercial, and other corporate and field-based functions
- Understand the mission and vision of each advocacy organization in order to develop and recognize how to work most effectively with these partners; Expected to determine the best mix of organizations based on the expertise of the identified therapeutic space
- Expand the patient and professional advocacy associations outreach to patients and legislators through education.
- Implement Newborn Screening strategies and policies at state level as developed by VP Patient Engagement and Market Access.
- Support assay and biomarker development strategies for GM1 and Krabbe through implementation and programming
- Participate in brand planning and product team discussions to ensure the plans account for advocacy opportunities and leverage understanding of the organization's needs
- Serve as an internal resource and identify opportunities to maximize value of resources in current and potential patient relations programs for pediatric indications
- Bring forward the patient’s voice and patient experience in appropriate and balanced way on both GM1 and Krabbe disease.
- Minimum of a Bachelor’s degree, MS and PhD preferred with 12 years of experience in the bio/pharmaceutical industry and/or a related patient focused organization (an equivalent combination of experience and education may be considered)
- Minimum 5 years of patient advocacy experience required
- Rare disease experience required, CNS, gene therapy and/or pediatrics experience preferred
- Demonstrated leadership and collaboration skills with a proven ability to build and maintain relationships with diverse groups of people and audiences
- Ability to foster strong, compliant, productive and value-added alliances
- Health policy implementation experience as well as state level engagement experience are valuable to the role but not a core criteria for the role.
- Intellectual curiosity
- Proficient in event planning, industry standards and regulations, with a strong awareness of emerging trends around patient-centered research and technology, patient experience, and patient-reported outcomes
- A thorough knowledge and understanding of the social media space, business channels and patient and consumer trends
- Proven understanding of key trends in both internal and external environment with an impact on patient and consumer engagement, specifically in areas that affect political and social norms of relevance
- Demonstrated understanding of the needs and behaviors of patients living with or at risk for rare diseases or conditions and sensitivity to diverse groups of people
- Ability to summarize complex medical and scientific concepts using basic terms to successfully communicate to target patient/advocate audiences.
- Solid understanding of the applicable regulatory environment and industry standards
- Possesses compassion, empathy and a high degree of integrity and accountability
- Ability to build, maintain and influence effective working relationships with key internal and external stakeholders, including marketing, medical affairs, corporate communications and academic centers
- Demonstrated technical, organizational, project management, negotiation and budgeting capabilities and a self-starter with excellent ability to implement and execute
- Excellent verbal, written, and presentation communication skills. Adept at creating and communicating a clear vision and purpose.