The Global Lead of Patient Advocacy for Rare Diseases leads the development and execution of global patient advocacy strategies across the Rare Diseases franchise as part of an integrated corporate affairs approach.

As a newly created role within a new organization currently being built, it plays a pivotal part in shaping the future direction of our patient advocacy model.

This role serves as the bridge between Ipsen and the patient community, ensuring that patient perspectives inform business decision-making.

This role is responsible for building trusted, long-term relationships with global and regional advocacy organizations and drives global initiatives that improve access, awareness, and patient outcomes both globally and locally.

It partners cross-functionally and with in-country teams to ensure Ipsen is recognized as a transparent, responsive and trusted partner to the community.

MAIN RESPONSIBILITIES

Strategic Leadership

• Define and implement global patient advocacy strategies aligned with Rare Diseases goals

• Ensure patient insights and unmet needs are integrated into market access and business strategies

• Lead policy and advocacy initiatives that amplify the patient voice in shaping the healthcare systems and Integrate a patient strategy in collaboration with Patient Affairs team within each brand plan alongside the other CA stakeholders

• Lead global advocacy planning, budgeting, and execution

Stakeholder Engagement

• Build and sustain long-term partnerships with global and regional patient advocacy groups, coalitions and alliances, groups representing families and caregivers, and community representatives.

• Co-create initiatives with patient groups that advance common goals i.e. disease awareness, earlier diagnosis, equitable access to innovation, etc.

• Work with the medical function (patient affairs) and business to incorporate patient insights into the patient advocacy strategies.

• Represent the company at global patient forums, conferences, and policy roundtables

• Facilitate transparent communication between the company and patient communities

Cross-Functional Collaboration

• Collaborate with medical affairs, market access, brand/asset, regulatory, and communications teams

• Support internal teams with advocacy-related education and training

Program Development

• Design and launch global patient advocacy programs and disease awareness campaigns

• Oversee sponsorships, grants, and collaborative initiatives with advocacy organizations

• Monitor and evaluate impact of advocacy efforts on patient outcomes and company reputation

Governance

• Ensure all patient engagement activities comply with applicable laws, regulations and internal policies

KNOWLEDGE & EXPERIENCE

Knowledge & Experience:

• 10+ years in patient advocacy, public affairs, or related roles in pharma/biotech
• Proven experience in Rare Disease including global stakeholder management
• Strong understanding of the Rare Disease landscape, including policy and regulatory frameworks
• Previous experience in global or regional roles
• Experience integrating patient voice into clinical and commercial strategies
• Existing relationships and network of global rare disease patient groups
• Strong cross-functional skills and proven ability to influence

Education / Certifications:

• Bachelor's or Master's degree in Life Sciences, Public Health, Communications, or related field

Language(s) (essential): English, Knowledge of additional European languages preferred

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