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Community Engagement Lead, Ocular

Date: Apr 25, 2021

Location: Remote- US, 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.




The Community Engagement Lead, Ocular is responsible for supporting Spark’s interactions with non-profit advocacy organizations and low vision service providers serving the inherited retinal diseases (IRD) community, under the direction of the Head, Patient Advocacy.  This individual will assess and evaluate the Spark presence in the IRD community, evaluate opportunities to engage with the low vision service provision community on a regional and local level, build our presence with advocacy partners in the IRD community with a focus on raising awareness of and aiding in educational efforts about genetic testing and investigational gene therapy research for IRDs.  This is a cross functional position that will lead input to development of strategies, educational programs and materials in support of Spark IRD teams, help to build and maintain effective relationships with the IRD patient community, and work to increase the awareness and understanding of the importance of genetic testing and gene therapy research among the IRD community.  Working in close partnership with other members of the patient advocacy team this individual will gain a deep understanding of the ocular/IRD advocacy landscape and build collaborative relationships with advocacy groups of relevance where appropriate  




Evaluate the landscape of IRD advocacy organizations (nationally, and globally in collaboration with Roche ocular colleagues) and low vision service providers (United States),and identify areas of mutual interest and opportunities to collaborate.

Develop strong relationships with select IRD advocacy organizations and low vision service providers at the national, regional and local level. Serve as point of contact for groups and act as a Spark ambassador.  Collaborate with Roche group Patient Partnerships colleagues regarding ex-US patient advocacy relationships.

Create and, in partnership with IRD-focused field team members, execute engagement and educational outreach plan for IRD patient advocacy organizations based upon areas of mutual interest and need.  Develop and deliver educational presentations, materials, and resources to further conversation and address gaps in knowledge around investigational gene therapy research and genetic testing in the IRD community.

Build awareness of Spark at relevant national and regional patient advocacy meetings in the IRD community.

Gather and disseminate insights from the IRD community to inform program and service development.

Provide regular Spark updates to US IRD patient organizations and identify opportunities to engage around genetic testing and investigational gene therapy research programs.

Manage budget and execute logistics of sponsorships and charitable donations to IRD patient organizations, in compliance with Spark’s Sponsorships and Charitable Contributions and Exhibits/Displays policies.

Serve as internal IRD patient advocacy liaison to Commercial, Government Affairs, and Corporate Communications efforts including highlighting patient and community stories on internal and web properties, and contributing to social media content calendar.

Support internal culture of “champion the patient” - embodying and infusing this core value throughout daily interactions and specifically enhancing internal awareness of the IRD patient journey by facilitating internal patient speakers, community volunteer opportunities, IRD awareness day activities and otherwise finding opportunities to share the patient experience. 


Education and Experience Requirements


  • 5+ years of experience in the Bio/Pharma industry with prior experience working in ocular and/or rare disease patient advocacy, services, genetic testing, public affairs or government relationships
  • Bachelor’s degree required
  • Master’s degree in Genetic Counseling, Nursing, Public Health, Social Work, or other related/science degree highly desired
  • Up to 50% Travel is required


Skills Abiliities and Competencies


  • Experienced biotechnology/pharmaceutical professional with relevant experience in patient advocacy at a national level and/or the IRD community
  • Prior experience in Rare Diseases
  • Demonstrated examples of effective patient engagement and stakeholder management
  • Strong communication and interpersonal skills with a demonstrated ability to build genuine relationships quickly with diverse populations
  • Scientific acumen with ability to translate complex scientific information to a broad audience, and to develop and deliver scientific educational content appropriately to patient audience
  • Strong business acumen with an ability to understand key clinical, scientific, and commercial information and relay it to stakeholders in an authentic manner
  • Collaborative work style with an equally strong ability to work independently and with a sense of urgency
  • Familiarity with clinical and regulatory processes related to drug development
  • Ability to influence in a proactive, objective and diplomatic manner with outside community leaders
  • Proficiency in navigating a high energy, matrixed, and dynamic work environment alongside dedicated colleagues at all management levels with ease and comfort
  • Demonstrated experience involving effective patient engagement and stakeholder management
  • Willingness to travel approximately 50% of the time


Complexity and Problem Solving


Utilize insights from IRD community to inform the development of potential genetic testing programs and partnerships, educational presentations, materials, and resources. Execute engagement and outreach plan for IRD patient advocacy organizations based upon areas of mutual interest and need. As program progresses, assess needs and develop strategy for IRD advocacy and low vision service provider engagement.  Operationalize that strategy in compliant coordination with commercial team members.


Internal and External Contacts



Leadership of US IRD patient advocacy groups (Customer)

Commercial colleagues (Zone leads, field teams, Marketing, Diagnostics)

Corporate Communications Colleagues (Internal)

Marketing/PR/Market Research/Patient Communications Agencies (Vendors)