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Please email Julie Walters with your resume to apply!

Executive Director

Part-time, Remote


Background & Overview

The PCDH19 Alliance is seeking a dynamic, part-time Executive Director (ED) to lead our small & growing rare disease, patient-centered 501(c)(3) not-for-profit organization. Reporting to the Board of Directors, the ED will be responsible for strategic and operational planning for the Alliance’s programs, expansion, and execution of its mission, as well as leading fundraising efforts to meet the organization’s financial goals.


This position has the potential to become full-time based on growth of the organization and desire of the Executive Director. Finding the right fit for this position is our top priority and we will provide the necessary support and training for the candidate selected.


Responsibilities and Duties

Leadership and Advocacy

  • Provide vision and strategic direction for the organization

  • Actively represent the organization within our patient & family group, as well as publicly at events and relevant conferences (travel will occasionally be required)

  • Network and develop relationships with relevant industry stakeholders including other patient organization leaders, doctors & researchers, and pharmaceutical companies through outreach, involvement on committees, and other advocacy opportunities


Daily Operations and Programming

  • Be responsible for the overall planning and organization of the Alliance’s daily operations and programs

  • Plan and facilitate the PCDH19 Alliance’s Biennial Family and Professional Conferences

  • Provide direction for and help initiate new programs to support people with PCDH19 & their families

  • Will travel for fundraising events, conferences, and additional relevant meetings


Fundraising and Communication

  • Develop and execute organization-wide fundraising campaigns

  • Support individuals and families who are interested in hosting a fundraising event on behalf of the organization

  • Develop and maintain relationships with ongoing donors

  • Plan and write grant proposals as needed (~0-2 per year)

  • Develop social media marketing materials to engage community members, advertise fundraising events & programs, and spread awareness of PCDH19 Epilepsy



  • Excited by the opportunity to make a real difference in the lives of people living with PCDH19 Epilepsy and their families

  • Considers self an optimist and handles difficult situations with resiliency

  • Has demonstrated leadership and management skills

  • Thrives on trying new things with an openness to learn from failures

  • Resourceful with a drive to find answers and solutions to complex problems

  • Ability to work with a high degree of independence and accountability

  • Handles changing priorities effectively and with ease

  • Able to manage and prioritize multiple projects at once

  • Offers good professional judgment and consider self a sound decision maker

  • Strong written and verbal communication skills

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