Manager, Patient Advocacy, Global Rare Diseases

Chiesi Global Rare Diseases

Chiesi Global Rare Diseases is a Chiesi Group's business unit established in February 2020 and focused on research, development and commercialization of treatments and patient support services for rare and ultra-rare disorders, many of whom have limited or no treatments available.

This unit is based in Boston, Massachusetts, with a strong synergy with the headquarters in Parma.

Rare unit has a focus on research and product development for lysosomal storage diseases, rare hematology, ophthalmology disorders and rare immunodeficiencies. The unit is also a dedicated partner with global leaders in scientific research, patient advocacy and care. Discover more here.

Who we are looking for

This is what you will do

Reporting to the Head Patient Advocacy, this individual will develop and execute programs in the US, Canada, and Latin America (Americas) based on the global patient advocacy strategy. Rare disease therapeutic areas of focus include Lysosomal Storage disorders. We are looking for someone who has the desire to make a difference for patients and community by developing and expanding relationship-partnerships with patient advocacy organizations and ensure that the needs and insights from these relationships are reflected in Chiesi's decision-making process. You will represent the "voice of the patient" to educate internal cross-functional teams and champion patient-centered ideas and programs.

You'll be responsible for:

• 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.

You will need to have

• 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; advanced degree a plus.
• 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.

Location

Hybrid position in Boston, MA; Up to 35% domestic and international travel required. #LI-Hybrid

Compensation

The annual base pay for this position ranges from $140,000 to $160,000. Hourly and salaried non-exempt employees will also be paid overtime pay when working qualifying overtime hours. Base pay offered may vary depending on multiple individualized factors, including market location, job-related knowledge, skills, and experience. If hired, the employee will be in an "at-will position" and the Company reserves the right to modify base pay (as well as any other discretionary payment or compensation program) at any time, including for reasons related to individual performance, Company or individual department/team performance, and market factors.

What we offer

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.