Director Global Rare Diseases - HIDO

Director, Real World Evidence, Global Rare Diseases - HIDO

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., betathalassemia, 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…