Join a Mission That Changes Lives
The Erdheim-Chester Disease Global Alliance (ECDGA) is seeking a highly organized, dependable, and visionary individual to lead a growing international nonprofit organization focused on rare diseases.
This position is based in our DeRidder, Louisiana, office and is ideal for someone who enjoys meaningful work, values being part of a collaborative team, takes pride in helping others, and wants to lead a mission-driven organization that serves a global community.
OUR MISSION
The ECD Global Alliance is dedicated to the awareness, support, education, and research related to Erdheim-Chester Disease, an ultra-rare blood cancer. The organization works with the global community to accomplish the following:
Raise awareness of ECD. We strive to facilitate early diagnosis of the disease and to stimulate concern and efforts to increase knowledge regarding the disease and treatments.
Provide support to those affected by the disease. We will continue pursuing all avenues to lessen the burden as much as possible to those affected by ECD. Providing information, referrals, and one-on-one contact with others affected by the disease are just a few of the supports that are offered through ECDGA.
Advocate for and support research programs. The purpose of such research programs is to learn more about (a) the disease, (b) effective treatments for the disease, (c) possible cures, and/or (d) avenues to prevent the disease altogether. This will include collaborating with medical personnel, research personnel, and other health organizations to help define areas where research is needed, to fund research, and to help promote the benefits of ECD research to other health agencies. The alliance will also serve as a conduit to transfer needed information from its members to the research community per documented guidelines.
Share educational material and facilitate information sharing. This includes providing current, reliable, and factual information about ECD to patients, loved ones, medical personnel, research personnel, the media, and other organizations. It will also include promoting, sponsoring, and conducting workshops, symposiums, and other meetings to promote the goals of the alliance.
OUR FUTURE GOALS
- Raise awareness of ECD with medical professionals to reduce the time between disease onset and diagnosis.
- Educate, reach, and serve patients, doctors, and caregivers worldwide.
- Promote research related to ECD.
- Provide support to patients and caregivers in their ECD journey.
- Fund research to find ways to meet patient needs.
ECD Global Alliance Executive Director Job Description & Responsibilities
Areas of Responsibility
Strategic Visionary
- Collaborate with the board and staff to ensure the ECDGA's mission is fulfilled.
- Lead the ECDGA toward becoming a fully sustainable, mature organization while honoring and institutionalizing its 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 and implement resources.
- 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.
Qualifications
Experience and Skills Required
- Bachelor’s degree in a related field preferred.
- 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.
- 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.
While ECDGA is currently unable to offer employer-sponsored health insurance or retirement benefits, we provide meaningful work, opportunities for growth, and the chance to make a direct impact on the lives of patients and families worldwide. (Please Note: Indeed shows the ECDGA is offering a retirement plan. This is incorrect.)
We are an Equal Opportunity Employer. We are committed to creating an inclusive environment for all employees. All employment is decided based on qualifications, merit, and business need.
Pay: $70,000.00 - $90,000.00 per year
Application Question(s):
- Are you available to work in the DeRidder, Louisiana office on a regular basis?
Education:
Work Location: Hybrid remote in DeRidder, LA 70634
