National MPS Society
National MPS Society
Desired Location: 
Organization Type: 
Executive Director/CEO

National MPS Society President/CEO

The National MPS Society is seeking a dynamic President/CEO to lead the organization.

The National MPS Society exists to cure, support and advocate for MPS and ML diseases. The president/CEO functions as the National MPS Society’s chief executive and is the day-to-day leader of our 700+ member organization with 5.5 professional staff and serves as a strong leader in the rare disease community. Under the direction of the Board of Directors, the President/CEO provides leadership in executing our strategic goals. The President/CEO ensures proper planning, oversight, and direction of the National MPS Society’s research funding, family support programs and fund development activities, while maintaining high service standards consistent with the National MPS Society's mission statement. The National MPS Society’s national office and the President/CEO position are located in Durham, North Carolina.

The President/CEO will spearhead all functions of the office; lead efforts with the latest trends in MPS and ML research and patient advocacy; as well as in the delivery of the National MPS Society’s family support program; create, oversee, and implement the business plan; train and develop the team; build upon existing relationships and create new ones; foster relationships with the families served and the MPS and ML research community, while engaging with multiple partnerships in the MPS and ML community.
Effective leaders do more than just manage; they inspire. The President/CEO will inspire others to use their skills and experience to make a difference in the lives of the National MPS Society’s members every day. The President/CEO will use his or her talents to make the most of the team’s talents. The President/CEO will not only join, but will lead a dynamic, charismatic, passionate team of professionals committed to their jobs because they are committed to the families served and to finding a cure for MPS and ML. 

Responsibilities include:

• Lead staff, volunteers, sponsors, families, and other stake holders
• Work actively with Board of Directors to achieve strategic plan objectives
• Inspire collaborative fundraising efforts among staff, sponsors, and volunteers
• Create and implement a business plan to achieve annual budget
• Actively engage with leadership of pharmaceutical partners, Food and Drug Administration, National Institutes of Health and members of Congress
• Travel (both domestic and internationally) to represent the National MPS Society at professional meetings, board meetings, patient meetings or meetings with pharmaceutical companies
• Build upon existing relationships and create new relationships with families, sponsors, volunteers, researchers/clinicians, and other stake holders
• Work diligently to create awareness of the organization through increased visibility, national and community engagement
• Coordinate all public relations efforts to establish sound working relationships and cooperative partnerships
• Recruit, employ, and manage all personnel and volunteers; maintain a climate that attracts, retains and motivates a diverse staff and volunteers (including Board Members) of top quality people; and create a culture that attracts and efficiently engages the National MPS Society’s families, sponsors, researchers/clinicians and volunteers

Job Requirements

• 10+ years of supervisory and management experience with experience managing similar size staff
• Bachelor’s degree required; Master degree preferred or equivalent work experience as a President/CEO or Executive Director
• Experience with nonprofit health organizations; rare disease knowledge and/or knowledge of MPS preferred
• Experience with managing and working with Boards/Governance teams
• A commitment to, and an enjoyment of, creating and nurturing relationships
• Ability to travel regularly (both domestically and internationally) for regular stakeholder meetings/events
• Demonstrated leadership ability
• Demonstrated experience setting and achieving (if not exceeding) goals
• Excellent verbal communication and active listening skills with a persuasive, tactful, and professional demeanor
• Experience in building and generating business sponsorship relationships
• Ability to work a demanding, primarily self-directed work schedule
• Strong organization, multi-tasking and time management skills
• Demonstrates the highest level of personal and ethical standards
• Working knowledge of computers and personal communication devices
• Operational knowledge of social media

Additional Information:

• Please specify salary requirements
• Position type: full-time salaried employee
• Office location: Durham, North Carolina
• Job location: Due to the travel requirements of the position (meetings around the country regularly), a remote work environment may be considered; however, access to a major airport is necessary

The National MPS Society is an EEO Employer.

Career Level: 
Job Type: 
How to Apply: 

Please send your resume and a cover letter explaining why you would be a good match for this position and how you meet the qualifications to: Governance Committee Chair, Lisa Todd.

NO PHONE CALLS PLEASE. All inquiries are to be directed via email to