Manager, Patient Advocacy, Global Rare Diseases
$142,100–$173,690 year
HybridBoston, Massachusetts, United States
Job Summary
Develop and execute patient advocacy programs across the US, Canada, and Latin America, directly engaging communities in lysosomal storage disorders and rare hematology. Build long-term partnerships with patient advocacy organizations to ensure their insights inform Chiesi's decision-making and internal strategy. Represent the patient voice in cross-functional meetings, champion patient-centered ideas, and propose educational initiatives, advisory boards, and policy advocacy efforts. Maintain compliance with legal and regulatory guidelines while exchanging information with stakeholders. Serve as the primary point of contact for global rare disease advocacy strategy, translating patient needs into actionable business goals.
Required Qualifications
- 2-3 years of experience in the bio-pharmaceutical environment
- at least 1 year of relevant professional experience in rare disease and patient advocacy
- Bachelor's degree in social science, public health, science, or related field
- Strong communication, networking, and interpersonal skills
- ability to build relationships and establish trust with a wide range of stakeholders
- Good listening skills
- ability to identify needs from multiple stakeholders
- ability to translate terms and concepts to audiences with different perspectives and levels of understanding
- Demonstrated passion for supporting patient and underserved communities
- Ability to work collaboratively across all functions and levels of influence both internally and externally
- Understanding of drug research and development, regulatory, compliance and disclosure guidelines
- Strong project and program management skills
- Hybrid position in Boston, MA
- Up to 35% domestic and international travel
Desired Qualifications
- advanced degree
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