Head of Patient Advocacy, Global Rare Diseases - Chiesi Farmaceutici S.p.A. : Job Details

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Head of Patient Advocacy, Global Rare Diseases

Date: Jul 25, 2025

Job Type: Direct Employee

Business Area: Public Affairs, Communications & CSR

Contract Type: Permanent

Location:

Boston, MA, US

About us

Based in Parma, Italy, Chiesi is an international research-focused pharmaceuticals and healthcare group with 90 years' experience, operating in 30 countries with more than 6,000 employees (Chiesi Group). To achieve its mission of improving people's quality of life by acting responsibly towards society and the environment, the Group research, develops and markets innovative drugs in its three therapeutic areas: AIR (products and services that promote respiration, from new-born to adult populations), RARE (treatment for patients with rare and ultra-rare diseases) and CARE (products and services that support special care and consumer-facing self-care).We are proud to be the largest global pharmaceutical group to be awarded B Corp Certification, a recognition of high social and environmental standards. We are a reliable company that adopts and promotes transparent ethical behavior at all levels.We are committed to embrace diversity, inclusion and equal opportunities. In fact, we are a global family made up of different cultures, different genders, generations, ethnicities, abilities, sexual identities and many other enriching diversities.

Chiesi USA

Chiesi USA is a specialty pharmaceutical company focused on developing and promoting products for the hospital, adjacent specialty and rare disease markets. We are a B Corp and Benefit company awarded Top Employer status for six consecutive years and certified as a Great Place to Work.At Chiesi, we share an entrepreneurial spirit and act as a force for good, pursuing high social and environmental standards, to ensure the wellbeing of our people, patients, and communities. We offer a work environment where professionals have the opportunity to build a purposeful career focused on helping others while achieving a fulfilling work-life balance, meeting exciting challenges, and engaging in important and rewarding work.

Who we are looking for

Chiesi is looking for a creative, highly motivated, and compassionate leader who is interested in making a positive impact on the lives of people living with rare diseases in the position of Global Portfolio Head Patient Advocacy, in the Rare Disease business unit.

This position works in close collaboration with, and reports to, the VP Global Patient Advocacy and is part of the Advocacy Leadership Team. This individual leads the company's efforts in building meaningful, impactful, and mutually productive partnerships with patient community organizations in one of Chiesi's strategic rare disease indication portfolios. We are looking for someone who will drive the development and execution of a comprehensive patient advocacy strategy that will ensure community insights are reflected in Chiesi's decision-making processes. The Global Portfolio Head will provide strategic leadership, mentorship, and operational oversight, ensuring the patient voice is integrated into all areas of the organization, while also overseeing the functional structure and development of a high-performing Patient Advocacy team.

• Develop and implement a coordinated global patient advocacy strategy for one of Chiesi's key rare disease indication portfolios, aligning with corporate goals and priorities with support from the VP, Patient Advocacy.
• Serve as an organizational expert on patient advocacy, providing insights, best practices, and guidance across teams within the strategic therapeutic area of responsibility.
• Enhance the integration and impact of the rare disease Patient Advocacy function.
• Build and lead a high-performing Patient Advocacy portfolio team, fostering a culture of collaboration, innovation, and patient-centered thinking.
• Identify and implement operational improvements to enhance the team's efficiency, effectiveness, and engagement with internal and external stakeholders.
• Establish and maintain key relationships with advocacy organizations to drive initiatives for collaboration and education. Share information on company activities and interests with advocacy organizations as appropriate.
• Develop and manage an annual budget for the Advocacy function within the strategic portfolio. Establish clear goals, metrics, and performance standards for the Patient Advocacy team, ensuring alignment with company priorities and industry standards.
• Provide mentorship, guidance, and professional development opportunities for team members to expand their expertise and impact.
• Represent the Advocacy function on key cross-functional portfolio leadership teams.

• 10+ years of experience in the bio-pharmaceutical environment with at least 7 years of relevant experience in rare disease and patient advocacy.
• 5+ years of experience leading and developing teams, with demonstrated success in building high-performing functions.
• Bachelor's degree in social science, public health, science, or related field; advanced degree preferred.
• Proven ability to establish and maintain strategic partnerships with advocacy groups, patient leaders, and caregivers.
• Comprehensive knowledge and understanding of global healthcare systems including compliance, legal, regulatory, and public policy considerations that impact the healthcare industry and patient engagement.
• Experience working internationally, with cultural awareness of rare disease communities and internal stakeholders in different countries.
• Strong leadership, organizational, and interpersonal skills, with a demonstrated ability to inspire and guide teams toward shared goals.
• Exceptional communication and relationship-building skills, with an empathetic and patient-focused approach.
• Ability to work both independently and collaboratively with internal cross-functional teams and diverse external stakeholders.
• Based in Boston and must be willing and able to travel nationally and internationally (approx. 40%).
• Multi-language skills a plus.

No matter where your path starts at Chiesi, it leads to inspiring possibilities. Your future is our focus, and we are committed to nurturing your development in our dynamic, friendly environment with access to resources and training every step of the way.

We provide top-class benefits, including comprehensive healthcare programs, work-life balance initiatives, and robust relocation support. Our salary package is competitive, comprising a basic salary, performance bonuses, and benefits benchmarked against the external market. Additionally, we offer flexible working arrangements, remote work options, and tax assistance services for foreign colleagues, all designed to help you thrive.

Chiesi USA is an equal opportunity employer committed to hiring a diverse work force at all levels of our business. All qualified applicants receive consideration for employment without regard to race, national origin, age, sex, religion, disability,marital status, veteran status, or any other basis protected by local, state or federal law. This policy applies with regard to all aspects of one's employment, including hiring, transfer, promotion, compensation, eligibility for benefits and termination.

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