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.

Apply for this Job

* - required fields

Attach File or Paste

Attach File or Paste

Voluntary Self-Identification

For government reporting purposes, we ask candidates to respond to the below self-identification survey. Completion of the form is entirely voluntary. Whatever your decision, it will not be considered in the hiring process or thereafter. Any information that you do provide will be recorded and maintained in a confidential file.

As set forth in this company’s Equal Employment Opportunity policy, we do not discriminate on the basis of any protected group status under any applicable law.

If you believe you belong to any of the categories of protected veterans listed below, please indicate by making the appropriate selection. As a government contractor subject to the Vietnam Era Veterans Readjustment Assistance Act (VEVRAA), we request this information in order to measure the effectiveness of the outreach and positive recruitment efforts we undertake pursuant to VEVRAA. Classification of protected categories is as follows:

A "disabled veteran" is one of the following: a veteran of the U.S. military, ground, naval or air service who is entitled to compensation (or who but for the receipt of military retired pay would be entitled to compensation) under laws administered by the Secretary of Veterans Affairs; or a person who was discharged or released from active duty because of a service-connected disability.

A "recently separated veteran" means any veteran during the three-year period beginning on the date of such veteran's discharge or release from active duty in the U.S. military, ground, naval, or air service.

An "active duty wartime or campaign badge veteran" means a veteran who served on active duty in the U.S. military, ground, naval or air service during a war, or in a campaign or expedition for which a campaign badge has been authorized under the laws administered by the Department of Defense.

An "Armed forces service medal veteran" means a veteran who, while serving on active duty in the U.S. military, ground, naval or air service, participated in a United States military operation for which an Armed Forces service medal was awarded pursuant to Executive Order 12985.

Why are you being asked to complete this form?

We are a federal contractor or subcontractor required by law to provide equal employment opportunity to qualified people with disabilities. We are also required to measure our progress toward having at least 7% of our workforce be individuals with disabilities. To do this, we must ask applicants and employees if they have a disability or have ever had a disability. Because a person may become disabled at any time, we ask all of our employees to update their information at least every five years.

Identifying yourself as an individual with a disability is voluntary, and we hope that you will choose to do so. Your answer will be maintained confidentially and not be seen by selecting officials or anyone else involved in making personnel decisions. Completing the form will not negatively impact you in any way, regardless of whether you have self-identified in the past. For more information about this form or the equal employment obligations of federal contractors under Section 503 of the Rehabilitation Act, visit the U.S. Department of Labor’s Office of Federal Contract Compliance Programs (OFCCP) website at www.dol.gov/ofccp.

How do you know if you have a disability?

You are considered to have a disability if you have a physical or mental impairment or medical condition that substantially limits a major life activity, or if you have a history or record of such an impairment or medical condition.

Disabilities include, but are not limited to:

  • Autism
  • Autoimmune disorder, for example, lupus, fibromyalgia, rheumatoid arthritis, or HIV/AIDS
  • Blind or low vision
  • Cancer
  • Cardiovascular or heart disease
  • Celiac disease
  • Cerebral palsy
  • Deaf or hard of hearing
  • Depression or anxiety
  • Diabetes
  • Epilepsy
  • Gastrointestinal disorders, for example, Crohn's Disease, or irritable bowel syndrome
  • Intellectual disability
  • Missing limbs or partially missing limbs
  • Nervous system condition for example, migraine headaches, Parkinson’s disease, or Multiple sclerosis (MS)
  • Psychiatric condition, for example, bipolar disorder, schizophrenia, PTSD, or major depression

1Section 503 of the Rehabilitation Act of 1973, as amended. For more information about this form or the equal employment obligations of Federal contractors, visit the U.S. Department of Labor's Office of Federal Contract Compliance Programs (OFCCP) website at www.dol.gov/ofccp.

PUBLIC BURDEN STATEMENT: According to the Paperwork Reduction Act of 1995 no persons are required to respond to a collection of information unless such collection displays a valid OMB control number. This survey should take about 5 minutes to complete.