Manager, Patient Advocacy, Global Rare Diseases

Chiesi Farmaceutici•Boston, MA

1d•Hybrid

About The Position

This role will develop and execute programs in the US, Canada, and Latin America (Americas) based on the global patient advocacy strategy, reporting to the Head Patient Advocacy. The focus is on rare disease therapeutic areas, including Lysosomal Storage disorders. The individual will build and expand relationships with patient advocacy organizations, ensuring patient needs and insights are incorporated into Chiesi’s decision-making. This role will represent the "voice of the patient" to educate internal teams and champion patient-centered initiatives. The position is hybrid and based in Boston, MA, with up to 35% domestic and international travel required.

Requirements

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 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.