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Patient Advocacy Experience Lead

Date: Apr 22, 2021

Location: Philadelphia, PA, US

Company: Spark Therapeutics

Join the Spark Team


We were born of innovation, springing from the curiosity, imagination and dedication of remarkable scientists and healthcare visionaries. Our shared mission is to challenge the inevitability of genetic disease by discovering, developing, and delivering treatments in ways unimaginable – until now.


We don’t follow footsteps. We create the path.



Patient Advocacy Experience Lead

The Patient Advocacy Experience Lead is responsible for ably delivering on the Patient Advocacy team’s commitment to being champions of our Champion the Patient value at Spark.  This role will hold primary responsibility for affording a connection to the patient experience across our business, through awareness day planning and execution, creating unique program offerings in patient storytelling, and design and maintenance of robust advocacy resources easily accessed and utilized by cross functional Team Spark members.

In addition, this highly cross functional role will spearhead the global patient advocacy team’s operational activities, including but not limited to contract execution, financial processing, materials management, and the build and maintenance of patient advocacy metrics as appropriate per disease state. 

This role reports to the Head of Patient Advocacy, based in Philadelphia. 




  • Represent the patient perspective internally and champion it in critical decision making as a consummate steward of Spark’s Champion the Patient core value
  • Lead internal communication efforts for patient advocacy activities, including management of patient advocacy intranet presence, proactively driving ongoing internal communication about Spark’s advocacy function aligned with working norms defined by Spark Corporate Communications
  • Conceptualize and execute patient-led speaking events and all-employee activities focused on recognition of the patient experience, including but not limited to awareness day activities and community events
  • End-to-end execution of patient-led storytelling experiences through a variety of media forums, which, depending on format, could include internal concept reviews, contracting, guest identification, interview conduction, recording/editing, post production, internal review, and publication/distribution as appropriate
  • Evolve programming and communications offered by the patient advocacy team to best meet the needs of all Spark employees


  • Coordinate responses to relevant patient inquiries to Spark’s patient inbox within 48 hours of receipt
  • As indicated, liaise with the Spark Corporate Contributions process on behalf of the patient advocacy team and chaperone requests for charitable contributions and sponsorships with the Committee for certain patient advocacy organizations. 
  • Satisfy all patient advocacy team financial processing requirements
  • Support and manage the team’s readiness and presence at meetings and events by securing appropriate internal approvals and coordinating payment processing for booth sponsorships and materials fulfillment
  • Foster the creation and/or refresh of patient education materials, including translation of existing collateral, and secure internal approval for messaging and FAQ documents to be used by the function
  • Maintain a working knowledge of existing platforms and industry best practices for capturing and reporting patient advocacy metrics as needed



  • Exceptionally strong written and verbal communication skills and honed interpersonal skills with a demonstrated ability to build genuine relationships quickly with diverse populations
  • Ease and comfort with public speaking and facilitating conversations with individuals with complex medical needs
  • Collaborative work style with an equally strong ability to work independently
  • Proficiency in effortlessly navigating a high energy and dynamic work environment alongside passionate and dedicated colleagues at all management levels
  • Keen ability to shift between diverse tactics, operate with a sense of urgency, and demonstrate confidence to suggest process improvements and define new paths in the absence of existing procedures
  • Technical aptitude to leverage available digital communications and data generating platforms
  • Creative, solutions-oriented mindset to enhance internal engagement with advocacy programming, bolstering the Spark connection to the patient experience


  • Bachelor’s Degree required; Disciplines of Social Work, Genetic Counseling, Public Health, Communications, Project Management, or related field preferred.
  • 5+ years relevant working experience preferably in related areas such as patient advocacy, patient services, marketing, communications, or public affairs, ideally in the biotechnology, pharmaceutical, and/or healthcare industries
  • Rare Disease Experience preferred


Nearest Major Market: Philadelphia