Our commitment to people with muscle diseases
is our greatest strength

Director, Global Patient Advocacy

Department: 122 Medical Affairs

Location: Waltham, MA

Company Overview:

Dyne Therapeutics is building a leading muscle disease company dedicated to advancing innovative life-transforming therapeutics for people living with genetically driven diseases. With its proprietary FORCE™ platform, Dyne is developing modern oligonucleotide therapeutics that are designed to overcome limitations in delivery to muscle tissue seen with other approaches. Dyne’s broad portfolio of therapeutic candidates for serious muscle diseases includes programs for myotonic dystrophy type 1 (DM1), Duchenne muscular dystrophy (DMD) and facioscapulohumeral muscular dystrophy (FSHD). For more information, please visit https://www.dyne-tx.com/, and follow us on TwitterLinkedIn and Facebook.

Role Summary

The Director, Global Patient Advocacy, will be a key member of the Global Medical Affairs team, supporting patient engagement to educate and connect Dyne to the patient, caregiver and advocacy communities. This role will be responsible for championing the patient perspective and bringing it to life across all aspects of Dyne’s business. This highly cross-functional and visible role will work with internal and external stakeholders and leaders to drive Dyne’s patient advocacy activities. The individual will be responsible for identifying opportunities to build awareness of Dyne – the company and its work in specific rare muscle disease areas – and to support the patient community priorities related to disease education, awareness, engagement and improvement in outcomes and to ensure consistency and compliance in Dyne’s interactions with the patient communities.

This role is located in Waltham, MA without the possibility of being remote. 

Medical Affairs Objectives:

  • Partner to establish Dyne as the global leader in targeted muscle delivery for rare muscle diseases and as a partner of choice
  • Drive patient advocacy engagement through demonstration of leading technology to target muscle for DMD, DM1 and FSHD
  • Build support for FORCE platform and key knowledge leader (KOL) engagement through FORCE platform education, dissemination of new data and communication
  • Advance understanding of how the FORCE platform will deliver potent DMD, DM1 and FSHD treatments that are differentiated from other technologies

Director, Patient Advocacy Primary Responsibilities:

  • PAO/Patient Engagement Communication, Oversight, Tracking:
  • Liaise Corporate Communications to ensure alignment on external communications
  • Support patient advocacy organization landscape analysis and tracking
  • Maintain patient advocacy organization (PAO) database
  • Manage the patient engagement calendar including conferences, speaking events, patient events
    • Drive annual disease awareness days planning, execution
  • Support implementation of the communications plan development and execution:
    • Outreach Plan development and execution to KOLs, PAOs
    • Patient-facing presentation development and iteration
    • Coordination of conference, webinar, etc. presentation development and scheduling including driving the External Review Committee (ERC) approval process for materials
    • Partnering on publishing blog posts and other proactive publishing opportunities
    • Development of related monthly social media and provide Dyne calendar communications support (web, SM, other)
    • Monitoring and responding to email mailbox and social media inquiries and patient communications tracking, follow up, and appropriate escalation
      • Maintaining approved responses deck updates, maintenance
    • Support clinical trial and trial outreach materials development and dissemination
    • Support planning and execution of Patient Advisory Workshops
    • Manage PAO conference booth development and participation
    • Support build, launch and management of Patient Advisory Council
    • Lead execution on PAO external partnerships
  • Support Global Patient Advocacy Administration:
    • PAO sponsorships management including budgeting, milestones and deliverables tracking, approval and reporting
    • Non-sponsorship (contract and other) grant intake, tracking, and approval process
    • Drive PAO annual internship program

Education and Skills Requirements:

    • Bachelor’s Degree, preferably in social science, science, public policy, or a health-related field10+ years of relevant professional experience in patient advocacy in a publicly traded biotech or pharmaceutical company or health-related non-profit. Ideal candidate has experience in rare disease, regulatory milestones (i.e., FDA Advisory Committee meetings and approvals) and commercial-stage experience.
    • An understanding of the pharmaceutical product lifecycle, including the pre-clinical, clinical, regulatory process and commercial stages
    • Established track record of building and maintaining relationships with colleagues as well as with non-profit and/or patient communities.
    • Demonstrated ability to create and lead successful patient advocate programs and partnerships
    • Strong leadership skills
    • Excellent communications skills: written, verbal and presentation delivery; A good listener; Demonstrated ability to simplify complex information and synthesize and distill information into clear, concise, and simple messages
    • Strategic thinker and problem solver; intellectually curious and perceptive; able to identify interdependencies and connections across the business; a critical thinker
    • Comfortable in a fast-moving, rapidly changing environment; able to establish structure and process when needed; consistently prioritizes high-impact projects; calm under pressure; works with a sense of purpose and urgency
    • Understanding of laws and regulations governing the biopharmaceutical industry with an understanding of regulatory bodies that impact communications and reimbursement, understanding of publicly-traded company communications requirements and rules
    • Proven understanding of the needs of individuals living with severe diseases and a demonstrated passion for supporting the patient community
    • Holds self and others to a high standard of ethics and integrity. Maintains confidentiality, exercises good judgment and discretion
    • Demonstrated ability to lead, influence and collaborate across the organization and at all levels, both internally and externally
    • Able to work independently with minimal supervision

The statements contained herein reflect general details as necessary to describe the principles functions for this job, the level of knowledge and skill typically required, and the scope of responsibility, but should not be considered an all-inclusive listing of work requirements.  Individuals may perform other duties as assigned, including work in other functional areas to cover absences or relief, to equalize peak work periods or otherwise balance workload.

This description is not intended to be constructed as an exhaustive list of duties, responsibilities, or requirements for the position. This position may change or assume additional duties at any time.  The employee may be requested to perform different or additional duties as assigned. All Employees are expected to adhere to all company policies and act as a role model for company values.

Dyne Therapeutics is an equal opportunity employer and will not discriminate against any employee or applicant on the basis of age, color, disability, gender, national origin, race, religion, sexual orientation, veteran status, or any classification protected by federal, state, or local law.


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