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Sr Patient Education Liaison

Date: Nov 13, 2018

Location: Remote, CA, 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 Sr. Patient Education Liaison is responsible for supporting Spark’s interactions with non-profit advocacy organizations serving the hemophilia community, under the direction of the Patient Advocacy Lead Hematology. This individual will build our presence with regional advocacy partners in the hemophilia community with a focus on raising awareness of, and aiding in educational efforts about, investigational gene therapy research for hemophilia. This position will build and maintain effective relationships with patient communities and work to increase the awareness and understanding of Spark’s leading gene therapy technology among the US hemophilia community.  Working in close partnership with other members of the patient advocacy team this individual will gain a deep understanding of the hemophilia advocacy landscape in the United States-West region and bring field insights back to inform broader strategies and programs.


• Develop strong collaborations with select hemophilia advocacy organizations focused at the US regional level. Serve as point of contact for groups and act as a Spark ambassador in US-West region

• In partnership and under direction of Advocacy Lead Hematology create and execute engagement and outreach plan for US-West regional hemophilia patient advocacy organizations based upon areas of mutual interest and need. 

• Build awareness of Spark at relevant US-West regional patient advocacy meetings in the communities we are working in.

• Contribute to the development of and deliver educational presentations, materials, and resources to further conversation and address gaps in knowledge around investigational gene therapy research in hemophilia.

• Gather insights from community through engagement and working together with Advocacy Lead Hematology deliver internally to inform program development

• Provide regular Spark updates to the US-West regional hemophilia patient organizations and find opportunities to engage around investigational gene therapy research programs.

• Manage budget and execute logistics of sponsorships and charitable donations to US-West regional hemophilia patient organizations.

• Stay current with relevant information and resources regarding biotechnology industry and health care legislation. 

• Contribute to internal Public Affairs and Corporate Communications efforts.

• Support internal culture of “champion the patient” - embodying and infusing this core value throughout daily interactions and specifically enhancing internal awareness of the hemophilia patient journey.


• Experienced biotechnology/pharmaceutical professional with relevant experience in patient advocacy at a national level and/or the hemophilia community at a regional level

• 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 up to 70% of the time including weekends


• 5+ years of experience in the Bio/Pharma industry

• Prior experience working with the hemophilia disease community preferred

• Bachelor’s degree required

• Master’s degree in Genetic Counseling, Nursing, Public Health, Social Work, or other related/science degree highly desired

• Spanish speaker preferred