Patient Advocacy Lead

Patient Advocacy Leader

JOB SUMMARY

GeneDx is seeking a Patient Advocacy Leader to build partnerships with Rare Disease patient associations and charitable foundations to promote greater access to genomic testing, further research and patient engagement leveraging GeneDx’s Whole Exome, Whole Genome, and our portfolio of digital solutions. This role requires an understanding of patient needs as it relates to navigating the rare disease diagnostic odyssey as well as the U.S. molecular testing space, payor landscape, and real world evidence. Experience working with patient-centered organizations, research foundations and industry associations to further access to genomic testing, supportive patient services, and research is highly preferable. The successful candidate in this role will be a passionate advocate for eliminating the rare disease diagnostic and treatment odyssey, excellent public speaker and have extensive relationships with patient groups, industry associations and foundations.

JOB RESPONSIBILITIES

Deepen our relationships with individuals, families and patient advocacy organizations impacted by rare disease.
Map the landscape of patient groups, charitable foundations and industry alliances relevant to rare disease diagnosis and treatment.
Lead development of an integrated strategy to partner with the right patient groups, charitable foundations and industry alliances to promote patient access to genomic solutions using GeneDx WES/WGS testing,
Define the programs most relevant for these partners, including as they relate to genomics, informatics, patient engagement and data science.
Advocate for more comprehensive testing and represent GeneDx’s solutions through patient-facing groups, provider organizations and charitable foundations and social media channels.
Develop proposals to collaborate with advocacy groups, foundations and industry partners to further our collective understanding of rare disease leveraging GeneDx’s genomics, informatics, engagement and data science capabilities.
Work collaboratively with internal team members and external partners, to align collaborations with external stakeholders with GeneDx’s commercial activities.
Identify and recruit patient champions who will be allies in promoting access to clinical and genomic information and organize educational events for both internal and external audiences.
Be the voice-of-the-patient at GeneDx and identify opportunities to improve our products and services for better patient experience and greater access personalized treatments and surveillance

QUALIFICATIONS

10 years experience working with or among patient advocacy groups, charitable hospital and/or research foundations; and preferably at least 5 years working with rare disease-related organizations.
Proven track record of successful partnerships leading to greater access to genomics for patients.
Ability to independently research, assess and drive execution of partnership opportunities with internal and external stakeholders.
Understanding of and ability to confidently speak about the role of genomics and clinical information to shorten the rare disease diagnostic and treatment odyssey.
Understanding of panel, exome and genome based diagnostics used in rare disease diagnosis, treatment selection, and early intervention.
Ability to work cross-functionally with internal and external stakeholders
Individual who is mission-driven, passionate about the patient experience and excited about GeneDx’s mission and how it relates to improving the lives of rare disease patients and their families.
A commitment to and a demonstrable track record of servant based leadership.

GeneDx is an Equal Opportunity Employer

https://grnh.se/9cda9e0c5us

GeneDx is a patient-centric health information company that delivers personalized and actionable health insights that inform diagnosis, guide treatment and improve drug discovery. The company is transforming healthcare through its industry-leading exome and genome testing and interpretation, fueled by one of the world’s largest rare disease data sets and its powerful clinical interpretation engine, Centrellis. GeneDx is uniquely positioned to accelerate the use of genomic and large-scale clinical information to enable precision medicine as the standard of care. This will enable strategic partnerships built around data from Centrellis that would provide equitable and value based care within a health system.