Senior Director, Patient Advocacy & Communications Lead, EMEA
PharmaBiotechRegulatory AffairsQuality Assuranceheormedicalemacroinform
Job description
Scholar Rock is delivering muscle-targeted breakthroughs to transform the treatment of spinal muscular atrophy (SMA) and other rare neuromuscular diseases where muscle atrophy remains a critical unmet need.
As a global leader in myostatin biology, a field focused on proteins that regulate muscle mass, the biopharmaceutical company is named for the visual resemblance of a scholar rock to protein structures. Our commitment to unlock fundamentally different treatment approaches is powered by broad application of a proprietary platform, which has developed novel monoclonal antibodies to modulate protein growth factors with extraordinary selectivity. Scholar Rock works every day to create new possibilities for patients through its highly innovative anti-myostatin program, including opportunities in additional rare neuromuscular diseases. Learn more about our neuromuscular franchise at ScholarRock.com and follow @ScholarRock on X and on LinkedIn. Summary of Position: The Patient Advocacy & Corporate Communications Lead, EMEA will be responsible for developing and executing integrated patient advocacy and communications strategies that advance the company's mission, strengthen stakeholder trust, and support business objectives across the region, starting with Spinal Muscular Atrophy (SMA) and including facioscapulohumeral dystrophy (FSHD) in line with clinical development milestones. This role will serve as the primary EMEA lead for patient advocacy engagement while also driving corporate and product communications, executive visibility, disease awareness initiatives, and internal communications. The successful candidate will engage the SMA community (and communities for future disease states) to establish and solidify trust and act as a connector to patient and advocate perspectives to drive Scholar Rock’s patient first values. They will act as a trusted strategic advisor to regional leadership and work cross-functionally with Medical Affairs, Global patient advocacy and communications, Market Access, Clinical Development, Regulatory, and Commercial Teams, supported by global and regional agency partners. The ideal candidate combines deep understanding of the rare disease community with exceptional communications and stakeholder management capabilities and the ability to thrive in a fast-paced, entrepreneurial biotech environment. Position Responsibilities Patient Advocacy Leadership
Develop and Execute Advocacy Strategy Contribute to the development and implementation of a comprehensive EMEA patient advocacy strategy aligned with corporate and regional objectives, starting in the SMA community and building the FSHD relationships.
Ensure patient and caregiver perspectives are appropriately incorporated throughout the product lifecycle, from clinical development through commercialization.
Identify emerging opportunities and risks within the advocacy and policy environment and provide strategic recommendations to leadership.
Foster a patient-centric culture throughout the organization. Build Meaningful Community Partnerships Establish and maintain authentic, trusted relationships with regional and national patient organizations, advocacy leaders, caregivers, and community stakeholders.
Serve as the primary company representative to patient advocacy organizations associated with direct-to-market counties throughout EMEA
Support development of and monitor execution against a patient advocacy group engagement playbook for partner market countries ensuring advocate engagement follows Scholar Rock standards
Identify, deliver, and participate in collaborative initiatives that support disease awareness, education, research, access, and policy priorities.
Build long-term collaboration based on transparency, trust, and shared goals. Generate Patient Insights Execute patient advisory boards, caregiver councils, listening sessions, and community engagement initiatives.
Collect and translate patient insights into actionable recommendations for internal teams.
Partner with Medical Affairs, Clinical Development, and Market Access to ensure the patient voice informs strategic decision-making.
Drive initiatives that better understand the patient and caregiver journey across EMEA markets. Corporate Communications Leadership
Corporate Reputation & Narrative Develop and execute a comprehensive EMEA communications strategy that enhances company reputation and stakeholder trust.
Shape and implement compelling corporate narratives that articulate the company's mission, vision, scientific innovation, and commitment to patients.
Ensure consistency of messaging and brand positioning across all EMEA communications activities.
Support the development of disease area leadership and corporate positioning strategies. Media & External Communications Manage regional media relations and proactive communications opportunities.
Draft and oversee press releases, corporate announcements, leadership messaging, Q&A documents, and stakeholder communications aligned with relevant global advocacy and communications plans
Support major corporate and product milestones and drive the regional comunication plans of key milestones, including regulatory decisions, clinical data presentations, launch activities, and access achievements.
Develop digital communications strategies and manage relevant corporate channels aligned with Global Communications plans
Monitor emerging issues and develop proactive communications plans and response strategies. Executive Communications & Thought Leadership Partner with senior leaders to enhance visibility and thought leadership within the rare disease community.
Develop executive presentations, conference materials, speeches, articles, and strategic messaging.
Support participation at patient, scientific, industry, and policy events across EMEA.
Position company leaders as credible and trusted voices within the neuromuscular disease ecosystem. Internal Communications
Develop internal communication strategies that foster employee engagement and organizational alignment.
Support communications related to business updates, organizational initiatives, and company milestones.
Reinforce company culture and mission through effective storytelling and employee engagement programs.
Ensure employees remain connected to the needs and experiences of patients and caregivers. Cross-Functional Leadership
Collaborate closely with Global Advocacy and Communications, Medical Affairs, Market Access, Commercial, Legal, Compliance, Regulatory Affairs, and Clinical Development Teams.
Act as a strategic partner across functions to align patient advocacy and communications initiatives with broader business priorities.
Ensure all activities comply with applicable regulations, industry codes, and company policies.
Provide patient engagement and communications expertise to internal stakeholders and project teams. Candidate Qualifications
Education Bachelor's degree required.
Advanced degree in Life Sciences, Communications, Public Affairs, Public Health, Healthcare Management, or related field preferred. Experience 8-12+ years of relevant experience within biotechnology, pharmaceuticals, healthcare, or rare diseases.
Significant experience in patient advocacy, corporate communications, public affairs, or stakeholder engagement.
Demonstrated success working with patient organizations and advocacy communities.
Experience supporting products in development, launch, or commercialization preferred.
Strong understanding of the rare disease landscape and European healthcare environment.
Experience working across multiple European countries and stakeholder groups. Core Competencies
Patient-Centric Leadership Passion for improving the lives of patients and caregivers.
Ability to build trusted and compliance relationships based on empathy, authenticity, and credibility. Strategic Thinking Ability to connect advocacy and communications initiat
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