Patient Engagement Specialist
NephCure Foundation - Berwyn, PA

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Organization Overview: Fast-paced, non-profit disease foundation seeks experienced professional for the position of Patient Engagement Specialist. The NephCure Foundation (NephCure) is the only organization committed exclusively to support research seeking the cause of the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome, improve treatment and find a cure. Approximately 5000 people are diagnosed yearly with these conditions. We are currently experiencing rapid growth in the US and other countries.

Position Summary: Mid-level leadership role focused on building and fostering relationships with patients and healthcare professionals to achieve our mission. The Patient Engagaement Specialist is responsible for planning, organizing and managing programs that: 1) identify people with FSGS and related rare kidney diseases, and 2) engage and educate these people, their families, supporters and healthcare professionals about NephCure research initiatives, public programs and fundraising events. Role requires the ability to work independently and with diverse constituencies, including patients, their families, researchers, physicians and other healthcare providers, NephCure staff and volunteers. Best candidate has strong interpersonal skills, an empathetic demeanor, attention to detail, and the ability to juggle multiple priorities. Ideal candidate has experience working with patient families and medical professionals. Position reports to the Director of Outreach and Engagement.

Responsibilities Include:

  • Be a primary point-of-contact for new patients; provide a source of support, empathic understanding
  • Design, implement and manage “patient finder” initiatives to include ongoing cultivation of medical professionals, day to day monitoring of social media and campaigns targeted at specific populations.
  • Develop and support patient and physician outreach programs at the regional, national and international levels
  • Use effective communication approaches and channels (social media, in-person meetings, webinars, emails, telephone calls, etc.) to build relationships and engagement with the Foundation
  • Identify and maintain information about resources/services that inform/support patients, their families and physicians
  • Participate in education programs about glomerular kidney disease and develop fluency in medical/scientific terminology
  • Develop and promote patient- and physician-oriented education programs, including Lunch and Learn education seminars and webinars
  • Develop and improve continuously documentation of interactions with patients, physicians and other stakeholders

o Maintain correspondence, update database systems, develop statistical reports
o Provide progress reports to NephCure management and volunteer leadership

  • Support special events and perform other tasks as assigned

Minimum Requirements/Qualifications

  • Bachelor’s degree; master’s degree preferred
  • Minimum of 5 years of professional work experience
  • Excellent verbal and written communication skills
  • Ability to adapt to a dynamic work environment and balance multiple priorities effectively
  • Ability to work independently with minimal supervision; self starter, enthusiastic, self-motivated
  • Excellent computer skills including MS Office and experience with database systems; use of Blackbaud database systems, particularly The Raiser’s Edge, is a plus
  • Availability to work occasional evenings and weekends and occasional travel will be required

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