The Senior Patient Advocacy Community Outreach Specialist 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 is a cross functional position that will provide input to development of strategies and programs, help to 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 and build collaborative relationships with advocacy groups of relevance where appropriate.
**Role can be field based or out of our Philadelphia headquarters**
• 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 partnership and under direction of Advocacy Lead Hematology create and execute engagement and outreach plan for US regional hemophilia patient advocacy organizations based upon areas of mutual interest and need.
• Build awareness of Spark at relevant US 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 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 regional hemophilia patient organizations.
• Stay current with relevant information and resources regarding biotechnology industry and health care legislation.
• Serve as internal hemophilia patient advocacy liaison to Public Affairs and Corporate Communications efforts including highlighting patient 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 hemophilia patient journey by facilitating internal patient speakers, community volunteer opportunities, World Hemophilia Day and otherwise finding opportunities to share the patient voice
• 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
• 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
Utilize insights from community to inform hemophilia program development. Contribute to the development of educational presentations, materials, and resources. Execute engagement and outreach plan for US regional hemophilia patient advocacy organizations based upon areas of mutual interest and need. As program progressed assess needs and develop strategy for field team.
Executive Directors and Leaders of US regional patient advocacy groups. (Customer)
Corporate Communications Colleagues (Internal)
Marketing/PR/Market Research/Patient Communications Agencies (Vendors)
• Bachelor’s degree required; Master’s degree in Genetic Counseling, Nursing, Public Health, Social Work, or other related/science degree preferred
• 5+ years of experience in the Biotech/Pharma industry with relevant experience in hemophilia patient advocacy at a national level and/or the hemophilia community at a regional level
• Must have demonstrated examples of effective patient engagement and stakeholder management
• Prior experience in Rare Diseases strongly preferred
• Requires basic knowledge of clinical and regulatory processes related to drug development
• Willingness to travel approximately 50% time
WHO WE ARE:
Transforming Patient’s Lives. Spark Therapeutics is a pioneering gene therapy leader transforming the lives of patients suffering from debilitating genetic diseases by developing one-time, life-altering treatments. We are embarking on our goal to deliver the first approved gene therapy product in the US for genetic blinding conditions and have a product pipeline addressing other unmet rare genetic diseases. We have an entrepreneurial culture and are looking for talented and passionate professionals who are committed and motivated to making a difference in the lives of our patients. If you share our passion for excellence and are looking for a dynamic work environment that fosters creativity, scientific innovation and team collaboration, you may be a great fit for our team.