President and Chief Executive Officer

Job Description

Lead the Next Chapter at the National MPS Society

Every person with MPS or ML can get a treatment that works, and no family faces this disease alone.

That is the vision of the National MPS Society—and we are seeking an exceptional President and Chief Executive Officer to help make it a reality.

For more than 50 years, the National MPS Society has supported individuals and families affected by Mucopolysaccharidoses (MPS) and Mucolipidosis (ML), advanced research, advocated for access and awareness, and brought together a community united by both extraordinary challenges and extraordinary hope.

Our mission is simple and ambitious: to cure, support, and advocate for MPS and ML.

Through the Society’s continued hard work and accomplishments, we have reached a pivotal moment. Scientific discovery is accelerating. New and emerging therapies are changing what may be possible for people living with rare diseases. The regulatory and access environments are evolving. Families need trusted information, connection, advocacy, and support. The Society is well positioned to expand its reach and influence while strengthening its financial sustainability and deepening its impact.

We are looking for a leader who wants to help us seize that opportunity.

The Opportunity

Reporting to the Board of Directors, the President and CEO will lead the National MPS Society's staff and serve as one of the organization's most visible ambassadors to families, donors, industry, researchers, regulators, policymakers, and the broader rare-disease community.

We are looking for a leader who can pair strategic vision with exceptional organizational leadership.

The next CEO will be expected to set clear direction, translate strategy into action, develop and empower talented people, strengthen the Society's financial position, cultivate important external relationships, and ensure that the perspectives of MPS and ML families remain at the center of the organization's work.

Just as importantly, we seek a leader who understands that how we accomplish our mission matters.

We want a CEO who leads with integrity and transparency; listens before acting; creates clarity and accountability without unnecessary bureaucracy; welcomes different perspectives; and builds an environment where talented people feel trusted, supported, and empowered.

What You Will Lead

Strategy and Growth

You will lead implementation of the Society's strategic plan, helping the organization focus its energy and resources on the priorities that create the greatest impact. You will bring forward-looking thinking, intellectual curiosity, and a willingness to challenge established approaches when better ones are possible.

People and Culture

You will lead and develop a talented team of approximately ten professionals working across family support, advocacy, science and research, philanthropy, communications, finance, and related initiatives.

You will establish clear expectations, develop leaders, encourage thoughtful risk-taking and innovation, and create a culture characterized by trust, compassion, collaboration, accountability, support, and inclusion.

Revenue and Sustainability

You will work with the Board and staff to strengthen the Society's long-term financial sustainability, with particular emphasis on increasing operating revenue and expanding the organization's base of support.

Working closely with our Director of Philanthropy, you will help cultivate major donors, deepen industry partnerships, open new doors, and communicate a compelling case for investing in the Society's mission.\

External Leadership

You will represent the National MPS Society with credibility, compassion, and influence.

You will build and strengthen relationships across the rare-disease ecosystem, including pharmaceutical and biotechnology companies, researchers, clinicians, regulators, payers, policymakers, advocacy organizations, donors, and other partners.

You will represent the Society at conferences, scientific meetings, regulatory discussions, industry gatherings, and other national and international forums—and help ensure that the Society is present where important conversations affecting MPS and ML families are taking place.

Families and Mission

Above everything else, you will help ensure that individuals and families affected by MPS and ML remain at the center of the Society's decisions.

Our community experiences extraordinary hope alongside profound uncertainty, grief, and loss. Our CEO must be able to enter that community with humility, empathy, compassion, and emotional maturity.

The successful leader will listen deeply to families and ensure that their experiences and priorities are meaningfully reflected in the Society's programs, advocacy, research agenda, partnerships, and strategic decisions.

Board Partnership

You will develop an open, collaborative relationship with the Board of Directors and work closely with Board members and committee leaders.

We value transparency. Our CEO will communicate candidly, surface difficult issues early, welcome constructive dialogue, and ensure that the Board has the information it needs to govern effectively.

Whom We Are Looking For

There is no single professional path to becoming the right CEO for the National MPS Society.

We are interested in accomplished leaders from nonprofit organizations, patient advocacy, healthcare, philanthropy, business, biotechnology, life sciences, and other sectors who can demonstrate the leadership qualities this role requires.

The strongest candidates will bring:

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• Significant organizational leadership experience and a demonstrated ability to build, develop, and lead high-performing teams.
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• Strategic vision combined with the ability to turn ideas into measurable results.
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• Exceptional integrity, judgment, transparency, and emotional intelligence.
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• A leadership style that balances accountability with compassion and fosters an inclusive environment where people feel valued, heard, and empowered to contribute.
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• Exceptional communication skills and the confidence to serve as an effective public ambassador for the organization.
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• Experience building productive relationships with a governing board.
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• A proven track record of success in fundraising, business development, building partnerships, and other revenue-generating initiatives.
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• Strong financial and organizational stewardship.
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• The ability to cultivate relationships with sophisticated external stakeholders and open doors for an organization.
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• Comfort leading through change and an interest in using technology—including artificial intelligence—to increase organizational effectiveness.
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• The ability and willingness to travel regularly, domestically and internationally.
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• A desire to make a sustained, multi-year commitment to the National MPS Society and the community it serves.
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• Deep commitment to the Society’s mission and the families it serves.
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• Experience engaging volunteers, patients, caregivers, and community members.
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• Advocacy, public policy, or nonprofit sector experience.
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• A commitment to fostering a culture of trust, inclusion, and collaboration.
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A bachelor's degree is required. A master's degree or significant equivalent executive leadership experience is preferred.

What Would Be Helpful- but Is Not Required

Experience as a President, CEO, Executive Director, or comparable senior executive would be valuable, as would familiarity with rare disease, patient advocacy, biomedical research, clinical trials, biotechnology, pharmaceuticals, or healthcare.

But we are intentionally casting a wider net.

The successful candidate does not need to be a scientist, physician, or regulatory expert. We value scientific curiosity—the ability to ask thoughtful questions, understand complex issues, learn quickly, and engage effectively with experts—more than scientific credentials.

Prior regulatory or FDA experience, international experience, and bilingual capability are helpful but not required.

An Organization Ready to Think Differently

The Society’s next chapter presents an opportunity to embrace new approaches to advancing its mission and increasing its impact.

That includes thoughtful use of technology and artificial intelligence to increase capacity, improve communication, preserve institutional knowledge, reduce administrative burden, and let talented people spend more time on work that requires human judgment and connection.

We are looking for a CEO who is curious about what is possible and thoughtful about where technology can—and cannot—replace human effort.

Relationships with families, donors, regulators, partners, and staff cannot be automated. Neither can judgment, empathy, courage, or leadership.

Compensation and Benefits

The anticipated salary range for the President and Chief Executive Officer is $175,000-$205,000 annually, commensurate with experience and qualifications. This position offers a remote and flexible work environment, with regular domestic and international travel required to fulfill the responsibilities of the role.

How to Apply

Candidates should submit a resume and letter of interest describing their interest in the National MPS Society's mission and the experiences and leadership qualities they would bring to the President and CEO role to  View email address on ziprecruiter.com.

Equal Employment Opportunity

The National MPS Society is an Equal Opportunity Employer and is committed to fostering an inclusive workplace. Employment decisions are made without regard to race, color, religion, sex, pregnancy, sexual orientation, gender identity or expression, national origin, age, disability, genetic information, veteran status, or any other characteristic protected by applicable federal, state, or local law.

The National MPS Society is committed to providing reasonable accommodations to qualified individuals with disabilities throughout the application and employment process, consistent with applicable law. We welcome candidates whose experiences, perspectives, and backgrounds will strengthen our organization and our ability to serve the MPS and ML community.