Executive Director

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 as well as cultivate positive and healthy relationships with the internal team, board of directors, patients, families, medical community, volunteers, partners and funders.

Reports to: Board of Directors, Erdheim-Chester Disease Global Alliance (ECDGA)
Location: DeRidder, LA (remote candidates will be considered)

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.

• 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.