Executive Director

3 days ago

De Ridder, United States Erdheim-Chester Disease Global Alliance Full time

Position Summary:

The Executive Director will provide thought leadership, strategic direction and influence for the success of the Erdheim-Chester Disease Global Alliance mission. This role will oversee and be actively involved in the day-to-day operations and will cultivate positive and healthy relationships with the internal team, board of directors, families, medical community, volunteers, partners and funders.


Reports to: Board of Directors, Erdheim-Chester Disease Global Alliance (ECDGA)

Location: DeRidder, LA


Areas of Responsibility:

Strategic Visionary – Collaborate with the board and staff to ensure the mission of the ECDGA is fulfilled.

  • Lead the ECDGA to become a sustainable and mature organization while honoring and institutionalizing the founding principles.
  • Ensure that programs align with the mission and goals.
  • Lead and manage strategic planning to position for long-term success.
  • Support Board Officers in enhancing visibility within the rare disease, medical professional, and patient/family communities.


Organizational Leadership – Oversee, implement resources, and actively engage in day-to-day operations.

  • Develop and maintain systems to track and evaluate programs and address operational challenges.
  • Ensure smooth administration of all operations and programs.
  • Negotiate and enter into agreements with other entities to achieve organizational goals.
  • Actively engage and energize volunteers, board members, funders, patients/families, and medical professionals in support of the ECDGA programs.
  • Develop and maintain systems and processes to ensure compliance with legal and ethical standards.
  • Hire, retain, and develop qualified staff.


Fund Development and Public Relations – Create visibility and serve as the ECDGA spokesperson to raise awareness with patient populations, medical providers, and other key stakeholders.

  • Establish and maintain long-term relationships with funders, including individual donors, major gifts, corporate philanthropic departments, and foundations.
  • Craft and execute the Development Plan to secure funds necessary to achieve the organization's mission.
  • Expand mission awareness through presentations at national and global conferences, webinars, online presentations, and other similar speaking engagements.
  • Develop a strategic communications plan including opportunities to draft articles, peer-reviewed articles, blog posts, and other earned media.


Fiscal Management –Effectively manage financial resources, ensuring sustainable levels of profitability, efficiency, and effectiveness in all areas.

  • Ensure ECDGA financial integrity with accurate financial statements and annual budget submissions.
  • Provide fiscal management within the approved budget, ensure maximum resource utilization, and maintain a positive financial position.


Experience and Skills Required:

  • Bachelor’s degree in a related field preferred.
  • Minimum of five (5) years of nonprofit leadership experience or in a related senior leadership position at a similar nonprofit, governmental agency, or a related business.
  • Past success working with a Board of Directors with the ability to cultivate existing board member relationships.
  • Strong business acumen and proven track record of fundraising and generating revenue in a nonprofit setting.
  • Proven ability to effectively manage, lead, develop, and empower a team of direct reports.
  • Excellent written, oral, and public speaking skills; a persuasive and passionate communicator with strong interpersonal and multidisciplinary project skills; ability to convey organizational vision and gain stakeholder support among a diverse set of stakeholders.
  • A self-starter with a proven track record of strong organizational skills, exceptional attention to detail, and the ability to appropriately prioritize and multi-task as needed.
  • Experience with event planning and event management for a wide range of constituents.
  • Ability to work effectively in a remote organization.
  • Ability and willingness to travel as needed for work.


Preferred Qualifications:

  • Community-minded with a passion for the mission of ECDGA.
  • Volunteer management.
  • Patient and caregiving advocacy.
  • Health systems management.
  • Experience with founder transitions a plus.

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