Manager, Patient Advocacy, Global Rare Diseases

Chiesi Group•Boston, MA

3d•$142,100 - $173,690•Hybrid

About The Position

This role is responsible for developing and executing patient advocacy programs in the US, Canada, and Latin America (Americas) aligned with the global patient advocacy strategy for Chiesi Global Rare Diseases. The focus is on rare diseases, particularly Lysosomal Storage disorders. The individual will build and maintain relationships with patient advocacy organizations, ensuring patient needs and insights are incorporated into Chiesi's decision-making processes. This role acts as the "voice of the patient" to educate internal teams and champion patient-centered initiatives. The position is based in Boston, Massachusetts, with a hybrid work model.

Requirements

2-3 years of experience in the bio-pharmaceutical environment with 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 and 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.

Nice To Haves

Advanced degree a plus.

Responsibilities

Contribute to the Global Rare Disease patient advocacy strategy, reflecting Chiesi’s commitment to the patient community.
Develop and implement plans to directly engage US and Canadian patient communities and share projects and programs with Chiesi LATAM partners while working cross-functionally with key internal partners.
Serve as primary point of contact to build and maintain collaborative, long-term partnerships with stakeholders and patient advocacy groups and compliantly exchange of information related to Chiesi Rare Diseases areas of interest.
Represent the patient perspective during planning strategy meetings and contribute to the successful implementation and achievement of business goals.
Propose and implement patient advocacy programs and partnerships that include educational programs, advisory boards, patient speaker engagement, clinical trial awareness, policy advocacy, etc.
Work with advocacy groups to provide compliant resources to help them develop, grow, and build capabilities.
Champion the patient voice based on understanding the patient perspective to inform internal decision making.
Conduct engagements in adherence with legal, compliance and regulatory guidelines to ensure Chiesi Rare Diseases relationships with advocacy stakeholders are respectful and appropriate.
Represent Chiesi Rare Diseases at specific meetings and present when needed.