Director, Real World Evidence, Global Rare Diseases - HIDO

Director, Real World Evidence, Global Rare Diseases - HIDO Date: Jul 23, 2026 Department: GRD Global Medical Affairs Job Type: Direct Employee Business Area: Mktg, Market Access, Bus. Excellence & Med. Affair Contract Type: Permanent Location: Boston, MA, US About Us Based in Parma, Italy, Chiesi is an international research-focused biopharmaceutical group with 90 years’ experience, operating in 31 countries. More than 8,000 employees across the group are united by a singular purpose: promoting a healthier world for our people, patients, and the planet. This is what drives us as we research, develop, and market innovative drugs across our main therapeutic areas. Discover more here. At Chiesi we are thinking generations ahead, driving sustainable innovation with purpose. This fosters a culture of reliability, transparency, and ethical behaviour at every level. As a Benefit Corporation and a certified B Corp, we have embedded sustainability in our bylaws and continuously measure our impact. Diversity, inclusion, and equal opportunity are at the heart of who we are. We believe our differences make us stronger. We are a vibrant ecosystem of passionate, talented individuals united by strong values, each bringing unique perspectives that help us to continuously challenge the status quo for the better. 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 The Director, RWE is responsible for leading and executing the global RWE strategy and vision for the Hematology, Immunology, Dermatology and Ophthalmology (HIDO) Portfolio within GRD, ensuring the strategy, creation and updating of the integrated evidence generation plan (IEGP), in alignment with cross-functional partners to meet research and commercial objectives. This role drives enterprise-level RWE impact, including building strategic data partnerships, advancing innovative methodologies, and influencing cross-functional decision-making. You’ll be responsible for: Act as a change agent, effectively communicating the value of RWE and influencing adoption of new processes and approaches. This includes: Lead the global RWE strategy for the HIDO GRD portfolio, acting as the strategic RWE leader across development, regulatory, and commercialization phases, and ensuring its integration into regulatory, payer, and clinical decision-making across the HIDO Portfolio including Iron overload (e.g., beta‑thalassemia, SCD) Therapeutic Area (TA), Epidermolysis bullosa TA, Leber’s Hereditary Optic Neuropathy TA, and future pipeline or acquired assets. Increase the integration of RWD sources to enhance evidence-based decision making through research programs, while providing medical leadership as appropriate on cross-functional teams supporting local and global needs in a prioritized manner. Publish, where appropriate in high impact journals. Capability Building & Organizational Leadership Continuously improve RWE capabilities, processes, and infrastructure to support global and local evidence generation for HIDO Build and scale RWE capabilities as a competitive advantage for GRD Establish best practices, standards, and ways of working across regions Lead change management to embed RWE into core organizational processes External Data & Partnership Strategy Lead identification, evaluation, and execution of external RWD partnerships and data acquisition strategies Oversee due diligence, contracting support, and governance of external data sources and collaborations Build long-term strategic relationships with academic institutions, data vendors, consortia, and healthcare systems Scientific & Technical Leadership Foster the appropriate use and adoption of appropriate analytic technologies to improve RWE reliability and applicability to provide insights that matter to internal and external stakeholders Provide senior scientific leadership and deep technical expertise in observational research, epidemiology, and RWE methodologies Guide study design, analytics strategy, and interpretation of evidence Ensure adoption of innovative approaches, including AI/ML and advanced analytics, in RWE generation Cross-Functional Influence & Integration Act as the RWE subject matter expert within cross-functional teams (Medical, Clinical Development, Market Access, Regulatory) Influence asset strategies, development plans, and access strategies Lead alignment of RWE priorities across global and regional stakeholders Evidence Generation Oversight Provide executive oversight of RWE studies, registries, and non-interventional programs, ensure studies are aligned to strategic priorities and deliver high-impact outcomes Maintain governance of study concept development and prioritization External Scientific Leadership & Visibility Represent Chiesi externally in scientific forums, consortia, and partnerships Drive publication strategy and dissemination of RWE insights Maintain awareness of emerging trends, regulatory guidance, and methodological advances Leadership & Matrix Management Lead cross-functional and multidisciplinary teams in a matrix environment Oversee budgets, timelines, and resource allocation across RWE initiatives Manage consultants, mentor junior team members and as needed, direct reports over time You will need to have Advanced degree (PhD, DrPH, MD, PharmD, MSc) in epidemiology, public health, health economics, or related field 8+ years of experience in RWE, HEOR, epidemiology, or observational research in pharma/biotech or related setting Demonstrated success in leading RWE strategy at asset or portfolio level Strong experience in real-world data sources (claims, EHR, registries, etc.) Proven track record of building partnerships and influencing senior stakeholders Experience supporting regulatory and/or market access use of RWE Deep expertise in epidemiology and RWE methodologies Ability to translate evidence into business and clinical impact Demonstrated ability to influence senior stakeholders and cross-functional leadership Experience with advanced analytics, AI/ML, and innovative RWE approaches Ability to shape data strategy and infrastructure decisions Strong governance and oversight of complex, multi-country studies and programs Ability to manage competing priorities and large-scale initiatives We would prefer for you to have Rare disease experience strongly preferred; experience in hematology, immunology, dermatology, ophthalmology, or specialty medicines highly desirable. Location Hybrid role based in Boston, MA office. Up to 20% domestic and international travel availability required. #LI-Hybrid Compensation The annual base pay for this position ranges from $181,000 to $271,000. 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 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. 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. 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. Discover all our opportunities #J-18808-Ljbffr Chiesi Farmaceutici S.p.A.