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Senior Director, Patient Advocacy & Communications Lead, EMEA

πŸ•’ 3 days ago
Patient AdvocacyCorporate CommunicationsPublic AffairsStakeholder Engagement
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πŸ“œ Description

  • Develop and execute integrated EMEA patient advocacy and communications strategies, initially focused on SMA and expanding to FSHD.
  • Build trusted relationships with patient organizations, advocacy leaders, caregivers, and community stakeholders across EMEA.
  • Gather patient and caregiver insights through advisory boards, listening sessions, and community engagement, and translate them into recommendations.
  • Lead regional corporate, media, digital, executive, and internal communications, including messaging for key business and product milestones.
  • Partner across global and regional functions to align initiatives with business priorities and ensure compliance.
  • Support disease awareness, education, research, access, policy, and patient engagement programs.

πŸ› οΈ Requirements

  • Bachelor's degree required; advanced degree in a related field preferred.
  • 8-12+ years of relevant experience in 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.
  • Strong understanding of rare diseases and the European healthcare environment; experience across multiple European countries.
  • Outstanding written, verbal, and presentation skills, including the ability to explain complex scientific and business topics clearly.
  • Strong stakeholder management, strategic judgment, cross-functional influence, and ability to manage multiple priorities.
Full 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

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. Β  Summary of Position: Scholar Rock is an Equal Opportunity Employer. We celebrate diversity and are committed to creating an inclusive environment for all employees.

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 initiatives to broader business goals.
          • Strong judgment and ability to navigate complex stakeholder environments.
          • Influencing & Collaboration

            • Exceptional stakeholder management skills.
            • Proven ability to influence without authority and work effectively across functions.
            • Communication Excellence

              • Outstanding written, verbal, and presentation skills.
              • Ability to translate complex scientific and business topics into clear and compelling messages.
              • Agility & Execution

                • Comfortable operating in a growing biotech environment where strategic thinking and hands-on execution are equally important.
                • Ability to manage multiple priorities and drive results with limited resources.

                • What Success Looks Like

                  Within the first 12-24 months, the successful candidate will:

                  • Implement an integrated multi-channel advocacy and communications plan for priority markets
                  • Establish the company as a trusted partner within the EMEA rare neuromuscular disease community, starting with SMA.
                  • Build a sustainable network of patient advocacy partnerships across key markets.
                  • Create a structured process for incorporating patient insights into business decisions.
                  • Elevate corporate visibility and strengthen the company's reputation among patients, healthcare professionals, policymakers, and partners.
                  • Deliver integrated advocacy and communications programs that support corporate growth and future commercialization.
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