Are you looking for the right person to compliment your company’s Patient Advocacy Team? Searching for an experienced Patient Advocate who can establish this function for your company? Perhaps you are seeking your next great adventure; well you have come to the right place!

PPALS is the perfect spot to post a career opportunity that will be seen by the crème de la crème in patient advocacy.

A benefit of PPALS Membership is to have access to this page as well post a complimentary opportunity. For information please contact Jean Campbell at jean@ppals.org.

BeiGene

Location: United States, Emeryville, CA

Executive Director, Ex-China Head, Early Patient Engagement and Professional Societies

Overview:

BeiGene continues to grow at a rapid pace with challenging and exciting opportunities for experienced professionals. When considering candidates, we look for scientific and business professionals who are highly motivated, collaborative, and most importantly, share our passionate interest in fighting cancer.

BeiGene is a global, science-driven biotechnology company focused on developing innovative and affordable medicines to improve treatment outcomes and access for patients worldwide. With a broad portfolio of more than 40 clinical trial candidates, we are committed to expediting the development of our diverse pipeline of novel therapies through collaborations or our own internal capabilities, with the aspirational goal of radically improving access to medicines for billions more people by 2030. BeiGene is a headquarter-less company by design, with a growing global team of approximately 6,000 colleagues across five continents.

Understanding the patient experience has become increasingly important in the drug development process. Under the direction of the SVP, Head of Medical Affairs (ex-Greater China) Global Head, Early Patient Engagement and Professional Societies will provide strategic and operational leadership to engage early and often in the early development process ensuring the patient voice and unique experiences are integrated in our development programs. This role will help represent BeiGene in support of our pipeline assets and therapeutic areas. This team member will engage to understand opportunities for BeiGene to work with organizations focused on patient unmet needs, services, research, and public health priorities. The role will require significant work on cross-functional teams to support the development and execution of pipeline advocacy strategy created in alignment with Clinical Operations to ensure that the patient voice is incorporated into BeiGene’s clinical trials across a variety of issues, including but not limited to awareness raising of the BeiGene pipeline, supporting clinical trial recruitment, partnering with professional societies and reputation building.

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Essential Functions Of The Job

  • Lead the development and execution of BeiGene’s overarching early engagement patient strategy
  • Build and operationalize Early engagement patient centered function within BeiGene
  • Create and oversee the execution of a multi-year clinical trial patient advocacy plan, including but not limited to stakeholder mapping, clinical program prioritization, and budget management
  • Maintain, steward, build and manage relationships, through in-person and virtual meetings, phone calls, and emails, with patient advocacy organizations in geographic locations applicable to our trial sites
  • Engage patient documents used in execution of clinical programs, including protocol and endpoint development, patient enrollment strategy, development of patient recruitment materials and trial result transparency
  • Collaborate with regulatory submissions and health authority engagement
  • Serve as the single point of contact and subject matter expert on patient-centric practices for therapeutic area advocacy organizations that work on behalf of patients in the research, clinical trials and regulatory space
  • Position BeiGene’s leaders in key advocacy partner in the oncology research arena
  • Responsible for development, management and support of strategic alliances and partnerships with relevant professional medical societies]
  • Drive the development and deployment of advocacy campaigns, such as patient advisory boards to integrate the patient voice and build the framework for pipeline assets
  • Represent the Company’s interests on an ongoing basis through participation in relevant scientific and therapeutic area meetings, congresses, and committees as well as proactive outreach to organizations to expand our BeiGene reach in alignment with our expanding pipeline
  • Prepare communication materials and presentations to share BeiGene’s clinical trial advocacy priorities internally and externally in support of the Company’s mission, in collaboration with Clinical Operations and Medical Affairs
  • Create and build partnerships with relevant external stakeholders founded on trust, alignment, and shared goals in prioritized therapeutic areas
  • Prepare regular updates and track metrics on the Company’s clinical trial patient advocacy engagement efforts as well as public health policy updates for presentation to senior leadership.
  • Work actively with internal stakeholders across market access, regulatory, medical affairs, clinical operations, clinical development and legal to integrate and advance the Company’s clinical trial patient advocacy engagement strategy
  • Manage consultants and/or agencies, as needed, to deliver against the clinical trial patient advocacy strategic plan
  • Contribute to the development of support materials, presentations, briefing materials, relevant reports, and other materials to further the Company’s thought leadership agenda
  • Conduct stakeholder mapping and landscape analysis to keep abreast of the evolving clinical trial and advocacy conversation
  • Coordinate across the Patient Advocacy and Public Health Policy team as well as the broader Corporate Affairs team to develop PR activities showcasing our efforts in clinical trial patient advocacy
  • Ability to plan and execute forums, events, panels, meetings with external stakeholders to share or gather information, discuss, and align on relevant topics
  • Member of SVP, Global Medical Affairs Leadership Team
  • Ability to host internal meetings, as needed, to brief, update and align with key internal stakeholders representing a united BeiGene perspective to the external environment

Required Education

  • Bachelor’s degree required; graduate degree required, MD and/or PhD preferred.
  • Preference for degrees in medicine, pharmacology, clinical science, or public health.

Required Experience

  • 15 years relevant professional experience preferred
  • Knowledge of and/or previous work in the pharmaceutical industry, clinical trials, clinical practice in oncology, external engagement with non-profit organizations.

Knowledge, Skills And Abilities Required

  • Proven ability to work independently
  • Assumes accountability and responsibility for actions and decisions
  • Strong soft skills imbued with humility, kindness and self-awareness
  • Excellent leadership organizational, interpersonal and communication skills
  • Demonstrated ability to manage competing deadlines
  • Works well under pressure in a fast-paced environment
  • Strong sense of humor and ability to not take yourself too seriously
  • Deep understanding of and demonstrated commitment to public health issues preferred
  • Passion for BeiGene’s mission to work to make cancer medicines are accessible and affordable around the world
  • Demonstrated commitment to BeiGene’s values of diversity, equity, and inclusion

Other Qualifications

  • Previously held external engagement positions with demonstrated success created and driving strategies, programs, and external engagement
  • Understanding of the prescription drug regulatory environment and clinical trial submission process in key countries around the world
  • Ability to work in a complex, fast moving, highly matrixed organization in constant change
  • Understanding of the importance and responsibility of advancing BeiGene’s reputation in the patient advocacy and public health policy community in each interaction
  • Ability to hold composure, be engaged and present adeptly to senior BeiGene leadership when needed
  • Scientific acumen – strong understanding of the clinical trial process, pharmaceutical products profiles, mechanisms of actions and collaborations with medical institutions to advance trial recruitment
  • Business acumen – ability to understand business priorities, the competitive oncology market and create strategic plans
  • The highest respect for compliance and compliant behaviors
  • High attention to detail and ability to summarize and communication complex concepts to all levels of the organization both verbally and in written documents
  • A global perspective on how trials are conducted around the world

Supervisory Responsibilities

  • This position does not have managerial responsibility but does require strong cross-functional matrix management skills
  • The opportunity to hire, train and manage a team as the role expands

Computer Skills

  • Proficiency with Microsoft Office (Teams, PowerPoint, Excel, and Word), WhatsApp, Zoom and general computer skills

Travel

  • Up to 50%, occasionally internationally, as needed

Competencies

Ethics – Treats people with respect; Inspires the trust of others; Works with integrity and ethically; Upholds organizational values.

Planning/Organizing – Prioritizes and plans work activities; Uses time efficiently. Completes administrative tasks correctly and on time. Follows instructions and responds to management direction.

Communication – Listens and gets clarification; Responds well to questions; Speaks clearly and persuasively in positive or negative situations. Writes clearly and informatively. Able to read and interpret written information.

Teamwork – Balances team and individual responsibilities; Gives and welcomes feedback; Contributes to building a positive team spirit; Puts success of team above own interests; Supports everyone’s efforts to succeed.

Contributes to building a positive team spirit; Shares expertise with others.

Adaptability – Able to adapt to changes in the work environment. Manages competing demands. Changes approach or method to best fit the situation. Able to deal with frequent change, delays, or unexpected events.

Technical Skills – Assesses own strengths and development areas; Pursues training and opportunities for growth; Strives to continuously build knowledge and skills; Shares expertise with others.

Dependability – Follows instructions, responds to management direction; Takes responsibility for own actions; Keeps commitments; Commits to long hours of work when necessary to reach goals; Completes tasks on time or notifies appropriate person with an alternate plan.

Quality – Demonstrates accuracy and thoroughness; Looks for ways to improve and promote quality; Applies feedback to improve performance; Monitors own work to ensure quality.

Analytical – Synthesizes complex or diverse information; Collects and researches data; Uses intuition and experience to complement data.

Problem Solving – Identifies and resolves problems in a timely manner; Gathers and analyzes information skillfully.

Project Management – Communicates changes and progress; Completes projects on time and budget.

We are proud to be an equal opportunity employer and we value diversity. BeiGene does not discriminate on the basis of race, religion, color, sex, gender identity, sexual orientation, age, non-disqualifying physical or mental disability, national origin, veteran status or any other basis covered by appropriate law. All employment is decided on the basis of qualifications, merit, and business need.

BeiGene

BIOMARIN

Location: United States, Remote

Head of Global Patient Advocacy & Engagement

Overview:

BioMarin is the world leader in delivering therapeutics that provide meaningful advances to patients who live with serious and life-threatening rare genetic diseases. We target diseases that lack effective therapies and affect relatively small numbers of patients, many of whom are children. These conditions are often inherited, difficult to diagnose, progressively debilitating and have few, if any, treatment options. BioMarin will continue to focus on advancing therapies that are the first or best of their kind.

BioMarin’s Product Portfolio Development (PPD) group is responsible for BioMarin’s corporate and R&D governance, business operating model (core teams and sub-teams) and portfolio strategy. PPD integrates overall product strategy and ensures planning and timely execution to inform decision making and development of therapies and life cycle strategies at BioMarin.

The importance of patient engagement and patient centricity is increasingly being recognized by the healthcare industry. As BioMarin evolves and enters more competitive and contested spaces there is a recognized need for patient engagement to become more systematic coordinated and strategic in its approach. Global Patient Advocacy and Engagement (GPAE) is a strategic function within BioMarin PPD that leads this effort, by integrating patient perspectives and insights into decision making across the product lifecycle. Specifically, the BioMarin  patient advocacy and engagement group works with patients, caregivers, and disease-specific non-profit patient advocacy groups throughout the life cycle to advance important therapies for unmet medical needs.

SUMMARY DESCRIPTION

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The Global Patient Advocacy and Engagement (GPAE) Head is responsible for providing leadership across BioMarin in support of GPAE’s vision, mission and strategic direction. The role reports to the Group Vice President, Product Portfolio Development (PPD).

The incumbent is a global subject matter expert on industry-wide patient-centric approaches, common practices and trends and drives incorporation of the patient voice across BioMarin accordingly. This role focuses broadly on developing an organization and function which encourages inclusion of patient insights across the company. The GPAE Head leverages his/her leadership and expertise to advise, influence and lead colleagues throughout BioMarin toward advancing patient engagement in a seamless, integrated and strategic fashion.

The GPAE Head is responsible for the leadership and management of GPAE team members. Working alongside senior leadership, the incumbent will ensure coordination of global patient advocacy and engagement strategies and activities across the company.

PRIMARY RESPONSIBILITIES:

  1. Provide leadership, direction and expertise in the incorporation of patient insights into decision making
  2. Pursue an enterprise wide approach to patient centricity
  3. patient engagement as a competitive advantage
  4. Develop metrics which support and demonstrate the value of patient engagement to the business
  5. Develop and drive company-wide strategies which support systematic patient community engagement
  6. Embody the PPD Core Values and provide leadership in demonstrating these values through everyday actions and behaviors

 KEY RESPONSIBILITIES:

 Lead Patient Advocacy and Engagement Strategies Across the Company

  • Integrate patient advocacy and engagement across BioMarin to ensure interactions are seamless, strategic, and coordinated through a GPAE operating model
  • Manage a global team such that regions have access to local and experienced GPAE staff sensitive to local regulations and practices
  • Assess future need for GPAE representation in LATAM and APAC regions
  • Research and maintain current knowledge on global healthcare system regulations, guidelines, and communications constraints to ensure compliance
  • Work with internal partners to develop policies, position statements, SOPs, etc. on patient inclusion and engagement as part of a Centre of Excellence approach
  • Identify patient engagement best practices and incorporate where beneficial into BioMarin Centre of Excellence approach
  • As appropriate, represent GPAE on key senior-level governance forums, working groups and teams in a standing or ad hoc fashion
  • Manage GPAE global OPEX budget
  • Develop Patient Plans (strategic plans) for each BioMarin programme aligned with other functional areas
  • Systemize a corporate process for collating and sharing patient and PAG insights accessible to relevant decision makers

Develop and Drive Company-Wide Approaches on Interactions with Patient Communities

  • Serve as BioMarin’s primary voice and subject matter expert on patient-centric practices and trends, and provide perspectives and expertise to senior leadership and cross-functional partners accordingly
  • Lead Global Patient Advocacy Leadership Council (PALC), a team of senior leaders from across the company that considers and endorses enterprise-wide patient centric  approaches
  • Update and inform senior leaders and other cross-functional partners on key industry trends in relation to patient engagement practice
  • Introduce functional level measures (OKRs) to incorporate patient insights into decision making
  • Identify and deploy external sources of advice to support patient engagement at BioMarin
  • Create opportunities for the BioMarin employees to experience and understand the lives lived by patients and families of the rare diseases

EDUCATION AND EXPERIENCE

  • BA/BS in health, life sciences, or business, advanced degree preferred; experience in lieu of education accepted
  • 15+ years of relevant pharmaceutical industry experience
  • Successful track record in patient engagement / advocacy required
  • Experience in rare diseases, drug development, commercial patient engagement required
  • Experience of leading change management and cultural change required
  • 5 or more years of people management experience

Absent a Medical or Religious reason that prohibits vaccinations, all our incoming employees must be vaccinated.

We are an equal opportunity employer and all qualified applicants will receive consideration for employment without regard to race, color, religion, gender, gender identity, sexual orientation, national origin, disability status, protected veteran status, or any other characteristic protected by law.

BIOMARIN

Jazz Pharmaceuticals

Location: United States, Remote, CA

VP, Global Patient Advocacy

Overview:

Jazz Pharmaceuticals plc (NASDAQ: JAZZ) is a global biopharmaceutical company whose purpose is to innovate to transform the lives of patients and their families. We are dedicated to developing life-changing medicines for people with serious diseases – often with limited or no therapeutic options. We have a diverse portfolio of marketed medicines and novel product candidates, from early- to late-stage development, in neuroscience and oncology. We actively explore new options for patients including novel compounds, small molecules and biologics, and through cannabinoid science and innovative delivery technologies. Jazz is headquartered in Dublin, Ireland and has employees around the globe, serving patients in nearly 75 countries. For more information, please visit www.jazzpharmaceuticals.com and follow @JazzPharma on Twitter.

Vice President (VP) for Global Patient Advocacy

October 2021

Jazz Pharmaceuticals plc (NASDAQ: JAZZ) is a global biopharmaceutical company whose purpose is to innovate to transform the lives of patients and their families. We are focused on developing life-changing medicines for people with serious diseases — often with limited or no options — so they can live their lives more fully. By transforming biopharmaceutical discoveries into novel medicines, we are working to give people around the world the opportunity to redefine what’s possible – to make the “small wins” big again.

We are a fully integrated, growing biopharmaceutical company with a diverse portfolio of marketed medicines and novel product candidates in two key therapeutic areas: neuroscience and oncology. We are an industry leader in sleep disorders and epilepsy and are growing our presence in oncology including hematologic malignancies and solid tumors. Across our commercial franchises and development programs, we focus on innovative therapies and support for children and adults living with these conditions. We actively explore new options for patients including novel compounds, small molecules and biologics, and through cannabinoid science and innovative delivery technologies.

SUMMARY DESCRIPTION

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The VP for Global Patient Advocacy will take on a newly created leadership role and is responsible for designing and setting up a bold strategy as well as providing leadership across our company in support of the Jazz business objectives, commitment to patients and our purpose – innovate to transform the lives of patients and their families.  The role reports to the Chief Legal Officer and SVP for Corporate Affairs. He/she is responsible for developing and implementing the company’s overarching global patient advocacy strategy for Jazz and enabling and embedding that strategy within the organization. This role will lead a global team supporting our disease areas and geographies globally, who work across the Jazz organization and with the patient community, caregivers, patient advocacy groups, professional organizations, and other partners to gather insights and advance a shared agenda to improve patient outcomes and the patient experience.

This person will be an experienced leader on global patient-centric approaches, best practices, and emerging trends that ensures that the patient voice is seamlessly incorporated into all key company decisions to support our drug development and commercialization activities across our portfolio. This person will leverage his/her leadership and expertise to work directly with executive management and advance shared accountability for the patient agenda throughout our company in a seamless, integrated and strategic fashion.

This role requires building strong relationships, collaborations and alignment with diverse internal cross functional partnerships within R&D, Global Medical Affairs, Corporate Communications, North American and EU/Intl regional business teams, Regulatory, Global Product Strategy, Corporate Sustainability and Social Impact, Government Affairs and Public Policy and other key partners to effectively execute on strategic, evidence-based programs.

KEY RESPONSIBILITIES:

  • Build, operationalize and integrate a systems-level patient-centered function within the company.
  • Engage with key internal partners and lead the development and execution of the company’s overarching patient strategy including defining, standardizing, and implementing standard methodologies for patient engagement, and embedding patient insights across the continuum of drug discovery and commercialization including as part of:
    • Strategic program planning including development of target product profiles
    • Patient focused execution of clinical programs, including protocol and endpoint development, patient enrollment strategy, development of patient materials, trial result transparency
    • Regulatory submissions and health authority engagement strategy
    • Market access and reimbursement submissions and ensuring access to treatment 
    • HEOR/RWE and patient reported outcome data generation
    • Patient journey mapping for the generation of impactful patient support programs
  • Foster culture of decentralized interactions with the patient community including, key advocacy groups, to ensure enduring partnerships based on shared objectives to improve patient outcomes and experiences. Ensure interactions with patient communities are integrated and seamless across the enterprise while ensuring differentiated regional and market specific strategies where appropriate.
  • Serve as our company’s primary voice and subject matter expert on patient-centric practices and counsel senior leadership and cross-functional partners on programs including patient level evidence generation (e.g. RWE). Update and inform senior leaders and other cross-functional partners on key industry trends, therapeutic area landscape and patient priorities to aid strategic decision-making.
  • Elevate best practices for identifying opportunities to build metric-driven programs that help patients, and their caregivers navigate their conditions, increase disease awareness, accelerate time to accurate diagnosis and increase access to therapy.
  • Collaborate with the Government Affairs and Public Policy team to advocate for and educate on key issues impacting patient focused care.
  • Collaborate with Corporate Communications and Corporate Sustainability and Social Impact functions to ensure Jazz’s mission and values are clearly communicated to advocacy organizations and the communities they serve.
  • Help develop strategic charitable programs and activities that support patient engagement and disease state education aligned with assigned therapeutic areas.
  • Drive the development and deployment of advocacy campaigns, such as patient advisory boards, to integrate the patient voice across the business continuum.
  • Work with Compliance and internal partners to develop policies, position statements, SOPs, etc. on patient engagement as appropriate and necessary.
  • Identify key thought leadership opportunities to represent Jazz patient advocacy in senior-level governance forums, working groups and publications.

EDUCATION AND EXPERIENCE

Requirements

  • BA/BS in health, life sciences, or business, advanced degree preferred; experience in lieu of education accepted.
  • 12+ year of related pharmaceutical, biotechnology, or health-care related industry experience.
  • 5+ years of related experience in patient advocacy and alliance development (may include relevant Patient Organization experience)
  • Expertise in national quality of care guidelines and government programs impacting patients such as, Medicare/Medicaid policy and Part D benefit design is a plus.
  • Understanding of the complexities associated with the changing health care environment (i.e., ACA, quality, care pathways and clinical guidelines, patient focused drug development) is required.
  • Background and understanding of public payor policy.
  • Global experience preferred with an ability to work globally whilst ensuring tailored regional and local execution.
  • Some travel may be required. (20%)

Leadership Abilities

  • Track record of people management and development (5 or more years)
  • Demonstrated success in building cohesive and integrated teams that apply their diverse skills and perspectives to achieve common goals.
  • Experience in translating long-term objectives into actionable, operational goals.
  • Experience collaborating with key stakeholders, influencing decisions, and managing work to achieve strategic goals and shared objectives.
  • Executive-level business acumen in the areas of business operations, industry practices and emerging trends.
  • Strong organizational and project management skills. Ability to multi-task, be flexible and quickly pivot in a fast moving/changing environment.
  • Strategic, innovative, and independent thinker who is action-oriented and a driver of change, with strong leadership and communication skills and strong interpersonal skills.
  • Ability to look ahead to future possibilities and translate them into breakthrough strategies.
  • Drive engagement by creating an environment where people are motivated to do their best to help the organization achieve its objectives.
  • Drive vision and purpose by painting a compelling picture of the vision and strategy that motivates others to action.
  • Embody the Jazz core values and provide leadership in demonstrating these values through everyday actions and behaviors.

Other Competencies

  • Ability to analyze issues, identify problem areas and provide the leadership necessary to effect change.
  • Experience operating in complex and/or matrixed cross functional environments.
  • Strong customer focus, building strong customer relationships and delivering customer-centric solutions.
  • Ability to make good and timely decisions that keep the organization moving forward.
  • Cultivate innovation by creating new and better ways for the organization to be successful.
  • A strong ethical and compliance mindset given the special nature of patient engagement with a focus on delivering positive patient outcomes and experiences.
  • Strong and effective communication skills, developing and delivering multi-mode communications that convey a clear understanding of the unique needs of different audiences. Strong ability to communicate effectively and get along well with different personality types across all levels of the Company.
  • A “can do”/results orientation, in a collaborative and team-oriented setting.
  • Ensure accountability by holding self and others accountable to meet commitments.
  • Instill trust by gaining the confidence and trust of others through honesty, integrity, and authenticity.

Jazz Pharmaceuticals is an equal opportunity/affirmative action employer and all qualified applicants will receive consideration for employment without regard to race, color, religion, sex, national origin, disability status, protected veteran status, or any characteristic protected by law.

Jazz Pharmaceuticals

Amicus Therapeutics

Location: UK, Marlow

Senior Manager, Patient & Professional Advocacy

Overview

As part of the International Patient & Professional Advocacy and wider team, the Patient Advocacy Manager will assist in modeling a sense of understanding and urgency for patient-first thinking throughout the company, in alignment with mission-driven behaviors. They are responsible for the consistent execution regionally and locally through innovative external and internal initiatives in both established and new geographies of operation and need.   A commitment to genuine patient centricity applied across different functions and in all interactions is necessary, with the energy and creativity to support existing activities and help develop and expand patient related programmes and services.

Roles and Responsibilities

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Support the strategy, coordination and execution of this foundational Amicus function

•            Externally: contribute to the development and execution of Patient Advocacy programmes and other activities, related to maintaining and further building Amicus’ relationships with: leaders of the patient advocacy community and individual families affected by rare diseases, healthcare professionals, institutions, professional and advocacy associations and other key stakeholders who are strategic to programme and lifecycle development (investigational and approved)

•            Facilitate community understanding of Amicus’ corporate giving programme and liaise as necessary in support of communications around Charitable Contributions and internal processes 

•            Internally: contribute to patient-focused programmes including assisting with long-term budget and planning, and augment cross-functional collaboration, assist in providing guidance and support to Amicus affiliates for local patient organisations liaison as well as other overall department needs aligned with local compliance codes and regulations. Model a sense of understanding and urgency for patient-first thinking throughout the company, in alignment with mission-driven behaviors

Develop and support Patient and Professional Advocacy activities

•            Participate in educational activities that support corporate and community objectives and the company’s presence in the rare genetic disease landscape, e.g., generate materials for patient organisation campaigns, in consultation with patient organisation leaders, such as an HTA advocacy toolkit or materials for disease awareness in the community

•            Represent the company at medical congresses, patient meetings, and within rare disease and industry associations and internal/external task forces

Assist in serving the community

•            Provide support and resources in accordance with compliance guidelines in response to inquiries from the patient community (affected individuals and families) and from patient advocacy organisations

Requirements

•            Undergraduate degree required with associated training preferred

•            Professional experience in healthcare or associated life sciences arena with a focus on patient advocacy in a corporation, clinical research organisation, NGO or agency associated with the biotech/pharmaceutical industry

•            Excellent strategic and tactical execution skills along with the ability to multi-task and be flexible

•            Ability to understand and effectively communicate (written and oral) scientific information for a lay audience, including presentations and contributing to educational resources and online content

•            Ability to work closely and collaboratively with other members of the department and interact with various internal and external stakeholders (i.e., across functions and geographies)

•            Ability to work in a global and culturally diverse environment

•            Excellent command of the English language, additional languages a plus

•            Experience with rare diseases preferred at a national level; regional or international level experience ideal

•            Knowledge of healthcare policies and industry compliance guidelines desired

•            Knowledge of drug development process, clinical trials and access services is helpful

•            Knowledge of internal compliance systems such as Veeva and SharePoint is helpful

•            Demonstrable ability to work collaboratively as a team player in a multi-cultural, dynamic, and fast-moving environment

•            A self-starter combined with a high energy level and equally as high emotional intelligence and compassion

Travel

•            15-35% travel, domestic, EU and international

 

We respect and celebrate the diversity of our people, their backgrounds and experiences and provide equal opportunity for all.  Our unique experiences, backgrounds and range of cultural perspectives enrich how we approach opportunities, pushing ideas as far and as fast as possible with patients always our top priority. Employee expertise, intelligence, and creativity drives our innovation, and our passion and commitment to excellence.  Our “Three Pillars of DEI” are interwoven into our Amicus culture and expands one person, one word, and one act at a time. For our employees, these three pillars are a touchstone for inspiration, guidance, and encouragement.

 

Amicus is an Equal Opportunity Employer and will judge all applicants based on their qualifications for the job, without regard to race, color, sex, religion, national origin, age, disability, sexual orientation, gender identity, protected veteran, disability status or any other characteristics protected by applicable federal, state or local law.

Amicus Therapeutics

Prevail Therapeutics

Location: New York, NY

Senior Manager, Patient Advocacy

Overview

The Sr. Manager, Patient Advocacy will be an integral member of the Prevail patient advocacy team providing tactical and strategic contributions to the organization. This person will report to the Director of Patient Advocacy and work cross-functionally with multiple Prevail teams as well as external patient advocacy organizations to support patient community engagement, education, and interactions, ensuring the patient perspective is incorporated and championed across Prevail’s research and development programs.

We are looking for a team member who is enthusiastic, self-motivated, hands-on, has excellent communication skills, and can support multiple disease areas. In this role, you will have exposure to senior management, colleagues at our parent company, Eli Lilly, and will be influential in helping to develop a patient-directed culture.

Key Responsibilities

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  • Serve as primary relationship manager for key disease-specific and rare disease umbrella advocacy groups and act as a Prevail ambassador with external patient groups, patient advocates, families/patients, and other stakeholders.
  • Coordinate existing relationships with the advocacy community and seek new partnering opportunities in relevant disease areas ensuring strong collaborations with patient advocacy groups.
  • Develop consistent patient community communication channels to ensure direct, credible and consistent sharing of information with patient advocacy groups. Leverage insights learned from the patient community to bring the patient perspective to Prevail’s project teams and decision-making and serve as a champion for patient and caregiver needs within Prevail.
  • Support the development and execution of strategies to address disease-specific challenges, increase disease awareness, decrease time to diagnosis (i.e. with genotyping), and increase access to clinical trial and gene therapy education resources.
  • Manage planning and execution of patient related activities such as advisory board and patient speakers and conduct market research as needed to gain the patient and family point of view into specific disease areas.
  • Coordinate key internal employee education and engagement events such as Rare Disease Day and other awareness days to help bring the patient community perspective to the broader Prevail team.
  • Proactively drive internal communication with regular updates and forums to share Prevail’s advocacy initiatives and work in the patient communities.
  • Manage functional charitable contributions and sponsorships and strategically fund programs and activities that support patient engagement and disease state education aligned with Prevail’s therapeutic areas of interest.
  • Lead functional operations and activities related to external events and conference participation including materials and attendance coordination and internal operational matters such as review and approval of communications.

Requirements:

  • Minimum 3 years of experience working in industry (pharma/biotech) and/or a patient-focused non-profit organization; prior patient advocacy experience preferred
  • Undergraduate degree required; Master’s Degree in related field (genetic counseling, public health) preferred

Preferences:

  • Strong track record of developing and supporting successful patient advocacy strategies and communications with excellent written and oral communication skills
  • Ability to be a company ambassador with high emotional intelligence and empathy required
  • Experience in gene therapy and/or rare diseases preferred
  • Strong attention to detail and the ability to manage multiple tasks in parallel
  • Ability to work individually, within a multi-disciplinary team, as well as with external vendors
  • Demonstrated ability to operate in a regulated industry and follow compliance guidelines
  • Strong business acumen with an ability to understand key clinical, scientific, and business information and relay it to stakeholders in an authentic way
  • Proven ability to build consensus and influence without authority within an organization and with external stakeholders

As a condition of employment with Eli Lilly and Company and its subsidiaries in the United States and Puerto Rico, you must be fully COVID-19 vaccinated and provide proof of vaccination satisfactory to the company. If you would like to request an accommodation for medical or religious reasons, you may do so at workplace_adjustment@lilly.com.

Prevail Therapeutics