Head of Rare Diseases

About the Role:

We are looking for a senior, hands-on leader to build and lead our rare-disease business across Germany, Austria and Switzerland. You will start with launch readiness and commercialisation planning for our first rare-disease treatment, and take responsibility for the transition, continuity and growth of an established rare-disease business in Switzerland. This role is subject to internal approvals.
Working through a lean cross-functional organisation, you will establish a centre-centric and patient-centric operating model. It will focus on earlier patient identification, stronger referral pathways, expert-centre activation, evidence generation and timely, sustainable access to treatment.

Your Responsibilities

• Strategy and business leadership: Build and lead the DACH rare-disease business and own the integrated business and brand plan across current and future assets. Own the DACH rare-disease P&L (forecasting, investment, gross-to-net) and build business cases for capabilities, headcount and investments.
• Launch readiness: Lead launch readiness and commercialisation for our first rare-disease treatment. Develop a launch sequence and roadmap for Germany, Austria and Switzerland, with clear governance, milestones and readiness indicators. Plan lifecycle and franchise development for future indications, subject to regulatory approval.
• Swiss business transition and growth: Lead the seamless transition of an established Swiss rare-disease business to Shionogi, protecting uninterrupted patient access and supply. Ensure operational readiness, maintain trusted relationships with specialist centres, physicians and patient organisations, and deliver a focused growth strategy. Integrate the business into the DACH franchise and use the transition to build scalable Swiss capabilities.
• Patients, expert centres and care pathways: Shorten the path from awareness and diagnosis to specialist referral and treatment. Build partnerships with expert centres, networks and diagnostic laboratories, and establish a centre-centric account model.
• Access and evidence: Set the DACH access ambition and lead country-specific strategies, including preparation for AMNOG and the Austrian and Swiss pathways. Anticipate reimbursement, pricing and evidence risks, and work with Medical Affairs on evidence planning.
• Advocacy and external engagement: Ensure patient and caregiver perspectives shape strategy. Build transparent relationships with patient organisations, and with Communications and Corporate Affairs, create a credible Shionogi rare-disease presence in DACH.
• Organisation and governance: Build, recruit and lead a lean, high-performing cross-functional team with simple operating mechanisms. Respect the independence of Medical Affairs, Regulatory, Pharmacovigilance and Compliance, while you remain accountable for the integrated business outcome.
• Patient support and operational readiness: Align Patient Services, Supply, Quality, Regulatory and other partners around launch needs. Plan for supply continuity and, where permitted, continuity-of-access or early-access mechanisms under the appropriate governance.

Location: Germany, with flexible working and regular travel across DACH 
Reporting to: General Manager 
DACH Portfolio: Rare-disease assets across Germany, Austria and Switzerland

You will bring:

• Significant leadership experience in pharma or biotech, including rare disease, orphan medicines or highly specialised care.
• Proven accountability for a business, franchise, major launch or commercial portfolio, including the transition or integration of an established product or business.
• Successful launch experience in rare disease, specialty care or another highly concentrated specialist market.
• Strong experience leading cross-functional teams across Commercial, Medical Affairs and Market Access, and translating strategy into high-quality execution.
• Strong commercial and financial acumen, including forecasting, investment planning and performance management.
• Experience building teams, capabilities or new franchises in an evolving environment, and working in complex matrix organisations across local, regional and global teams.
• Strong understanding of pharmaceutical compliance and the governance of Commercial, Medical Affairs, Market Access and Patient Advocacy.
• Excellent senior stakeholder-management and influencing skills.
• Business-fluent German and English.
• University degree in life sciences, medicine, pharmacy, health sciences, economics, business or a related discipline. An advanced scientific or business qualification is an advantage.

Of Particular Interest to us: 

• Ultra-rare diseases, lysosomal storage disorders, or neurometabolic, neurogenetic and rare neurological diseases
• Centre-based rare-disease commercial models, patient identification and diagnostic-pathway initiatives
• German AMNOG and DACH pricing and reimbursement, patient advocacy and expert-centre networks
• Multi-country DACH responsibility and launches that require new organisational infrastructure
• Business transfer, post-merger integration or marketing-authorisation transfer experience
• Small or mid-sized biotech environments and entrepreneurial build-up situations

Who You Are

• Strategic and hands-on: you set a clear direction and stay close to execution.
• Entrepreneurial: you enjoy building and structure ambiguity.
• Patient-led: you start from the needs of patients, caregivers and treatment centres.
• Cross-functional: you bring expertise together and respect the independent decision rights of specialist functions.
• Commercially rigorous and externally credible: you link patient needs to clear priorities, forecasts and accountable performance, and engage confidently with clinical experts, patient organisations and decision-makers.
• A people builder with high integrity: you attract talent, create clarity, and show sound judgement and a strong compliance mindset.

Why Join Us?

This is a rare opportunity to help build a new business from its foundations, combining the agility of a new rare-disease franchise with the capabilities and ambition of an established global pharmaceutical company. You will shape how Shionogi approaches rare disease across DACH.
Our ambition goes beyond launching a medicine. We want to build a rare-disease platform that protects continuity for patients who rely on treatment today, helps eligible patients to be identified earlier, connects them with expert care and enables access to meaningful treatment.