Careers
Employment Opportunities
Join us in advancing a mission that matters. NNPDF is welcoming passionate, driven individuals who are eager to contribute their talents to meaningful, high-impact work that supports and strengthens our community. If you’re ready to put your skills to work in service of a greater purpose, we invite you to explore the opportunities below and take the next step in joining our team.
For additional information please email [email protected].
FEBRUARY 2026
NNPDF Executive Director
The National Niemann-Pick Disease Foundation, Inc. (NNPDF) is a non-profit organization dedicated to supporting and empowering patients and families affected by Niemann-Pick disease through community education, collaboration, and research. Niemann-Pick diseases are in a group of lysosomal storage disorders that affect metabolism and are caused by genetic mutations. Niemann‑Pick diseases include ASMD (Acid Sphingomyelinase Deficiency types A, A/B, and B) and Niemann‑Pick type C (NPC). These diseases have a severe impact on quality of life and life expectancy, especially for children. Our vision is a world where Niemann-Pick disease is no longer a threat to a full and productive life for patients and their families.
Founded in 1993, the NNPDF serves patients and families at all stages of their Niemann-Pick journey. The NNPDF has grown mightily in the past 30 years and currently has over 500 Niemann-Pick families as members. The NNPDF is the largest Niemann-Pick disease family support organization in the world and is the US member organization of the International Niemann-Pick Disease Alliance (INPDA).
In 2026, through incredible perseverance and steadfast collaboration among patients and families, pharmaceutical partners, researchers, clinicians, and regulatory authorities, the NNPDF is in the extraordinary position of having multiple therapies newly approved by the FDA, as well as several more in development and clinical trial.
The NNPDF is seeking an experienced and passionate leader to serve as its next Executive Director and guide the community through this new post-approval landscape of commercially available treatments. This is a unique opportunity to lead a small, capable, and dedicated team that is making a meaningful difference for individuals and families affected by Niemann-Pick disease.
Please see the full job description below for more details on this exciting role.
About the Position:
The Executive Director (ED) provides strategic vision and planning, financial oversight and fundraising, and management of day-to-day operations. The ED engages deeply with the community, and champions the needs of patients and families in a wide variety of settings, including family services programming, treatment development, federal regulation and legislation, and drug access. The ED is responsible for developing and maintaining strong relationships with strategic and global partners, including pharmaceutical companies, advocacy organizations, research organizations and foundations focused on Niemann-Pick disease.
The NNPDF has a virtual office, and the ED is a remote position, with travel as required (~1x per month). The ED reports to the board of directors and oversees a small staff who work remotely.
Key Responsibilities:
Organizational Leadership and Vision:
- Partner with board of directors to set the strategic vision, goals, and priorities.
- Establish and align all stakeholders around a shared set of priorities and lead the organization in accomplishing those priorities.
- Provide strategic leadership and planning to ensure sustainability and growth, especially in family services, treatment access, and development.
Community Engagement:
- Build strong relationships with families and patients affected by Niemann-Pick disease, and ensure the organization centers the voices of patients and families.
- Actively engage the community in programs and committees that meet the needs of patients and families through all stages of the Niemann-Pick journey.
Strategic Partnerships:
- Nurture existing relationships and forge new partnerships with pharmaceutical companies to facilitate therapy development, access to treatment, education initiatives, and support for patients, families, and caregivers.
- Collaborate with research organizations and foundations focused on Niemann-Pick disease to promote education about the disease and research related to treatment options and real-world data generation.
- Strengthen relationships with advocacy organizations related to Niemann-Pick disease and other rare diseases to raise awareness about the needs of patients and families and to educate the community about legislative and regulatory initiatives.
Communications, Outreach, and Advocacy:
- Partner with staff to develop and implement an annual outreach plan and communications calendar for advocacy, marketing, and fundraising.
- Represent the organization at events to increase visibility of the NNPDF and actively engage with families and other key stakeholders.
- Effectively communicate with professionalism, poise, and presence to all stakeholders, including staff, board members, scientific advisory board members, and the entire Niemann-Pick disease community.
Operations, Human Resources, and Financial Management:
- Manage and implement day-to-day operations, including planning, budgeting, and staffing.
- Oversee family services programs, annual family support and medical conference, and regional events, including contracting with and managing external vendors.
- Lead and implement the strategic plan, in partnership with the board of directors and contracted partners.
- Collaborate with and maintain support from pharmaceutical partners.
- Develop a robust fundraising strategy to increase support from individuals and family foundations and to diversify other revenue sources.
- Seek out, apply, implement, and manage corporate and other foundation grant partnerships.
- Strengthen internal controls and policies to ensure financial stewardship and sustainability.
- Ensure compliance with legal, regulatory, and reporting requirements.
- Lead a small staff, contracted employees, and volunteers.
Qualifications:
- Minimum of 7 years experience in a non-profit executive management position, preferably in the rare disease community.
- Knowledge of the US healthcare system, including legislative and regulatory environment, as well as the development, commercialization, and access/reimbursement aspects of prescription products is a plus.
- Ability to articulate a clear vision, develop a strategic plan, and execute it within budget.
- Proven experience with financial planning, budgeting, and reporting.
- Demonstrated success in fundraising, grant writing, and securing major gifts.
- Strong track record of building and maintaining relationships, especially with pharmaceutical partners and peer organizations.
- Adept at listening and collaborating with diverse stakeholders to coalesce around common goals.
- Excellent communication skills, both oral and written; comfortable with public speaking.
To Apply:
NNPDF is committed to offering a competitive salary and benefits. Please email your resume, cover letter, 3 professional references, and a writing sample to [email protected] by April 15, 2026. A search committee has been established to oversee the process and looks forward to reviewing your application.
Equal Opportunity Statement
NNPDF is an equal opportunity employer. We celebrate diversity and are committed to creating an inclusive environment for all employees. All qualified applicants will receive consideration without regard to race, color, religion, gender, gender identity or expression, sexual orientation, national origin, disability, age, or veteran status.
Disclaimer
This job description is not intended to cover every activity, duty, or responsibility required of the employee. Duties may change or be assigned at any time with or without notice to meet the evolving needs of the organization.
FEBRUARY 2026
NNPDF Family Services Manager
The National Niemann-Pick Disease Foundation, Inc. (NNPDF) is a leading non-profit patient advocacy and family support organization dedicated to empowering individuals and families affected by all types of Niemann-Pick disease. Since 1993, NNPDF has served as a trusted resource for education, collaboration, and research, fostering a strong community of hope and resilience. Our mission is grounded in transparency, ethical governance, and respect for diversity, ensuring that every patient and family receives compassionate support throughout their Niemann-Pick journey. Please see the full job description below for more details on this exciting role.
About the Position:
NNPDF NNPDF is seeking a compassionate, organized, and mission-driven professional to serve as Family Services Manager and lead our family services programs. This role will support patients and families, expand engagement efforts, and strengthen NNPDF’s communications and advocacy presence. The successful candidate will work closely with the Executive Director and collaborate across departments to ensure the patient’s voice is amplified and meaningfully represented in all organizational initiatives.
NNPDF operates as a virtual office, and the Family Services Manager is a US-based full-time, fully remote position, with some travel required approximately four-to-six times per year depending on the need in the NNPDF community.
Key Responsibilities:
Case Management & Family Support:
- Serve as the primary contact for families, providing education on the Niemann-Pick disease journey and connecting them with resources for treatment, disease management, and ongoing support.
- Assess patient needs to assist the family in determining personalized goals.
- Regularly update the patient and family database (CRM).
- Refer patients and families to medical specialists, community, foundation resources, clinical trials, and FDA approved treatments, as appropriate.
- Establish regular follow-up contact with patients and their families to ensure continuous support and connection with the foundation, as needed.
Program Management:
- Gather and record patient and caregiver input through direct communications, surveys, and other forums, gaining knowledge to meet the needs of the NNPDF community.
- Collaborate with Foundation staff to inform the community of new information and changes in the Niemann-Pick Disease and rare disease communities that may impact patients and their families.
- Manager and continue to develop family service programs to ensure they effectively support the evolving needs of the NNPDF community.
- Continue outreach efforts to engage new families and grow the NNPDF community.
- Collaborate with staff to develop and implement comprehensive communication and outreach strategies to support family services.
- Serve as staff to the Family Services committee and be prepared to provide updates on programs, gather knowledge, and community needs.
- Connect as needed with the NNPDF pharmaceutical liaison committee and other patient advocacy groups.
- Assist with the creation, implementation, and distribution of family outreach tools and other informational resources.
Organizational & Event Support:
- Collaborate with the Executive Director, staff, and board of directors (through the Family Services Committee) on special initiatives and community engagement.
- Contribute to planning NNPDF events, including annual conferences, regional family events, and other special events throughout the year.
- Facilitate and/or participate in meetings, training, webinars, and cross-functional opportunities.
- Perform other duties as assigned.
Qualifications:
Education & Experience:
- Bachelor’s or master’s degree in genetic counseling, social work, nursing or related field with work experience in health care case management preferred.
- A minimum of 2 years’ professional level experience working with individuals and/or families in health care case management is required. Five years preferred. Rare disease experience a plus.
Skills & Competencies:
- Excellent communication, conflict resolution, and interpersonal skills
- The ability to empathize with families, understand their needs, provide clear and accurate education, answer questions, and communicate within ethical and legal boundaries without offering advice. Strong organizational and time management skills to balance new patient visits and required follow-up contacts with previous patients.
- Must be able to take complex scientific concepts and break them down into simple, easy-to-understand ideas.
- Effective at managing complex individual case needs.
- Proficient in Microsoft programs and comfortable using remote work technologies, including scheduling across time zones and conducting virtual meetings.
- Flexibility for occasional evening and weekend commitments.
- Based in the U.S. with the ability to travel as required.
- Bilingual (Spanish) skills preferred.
Compensation & Benefits:
- Competitive salary commensurate with experience.
- Medical Expense Reimbursement Program
- Paid time off, including holidays, personal, vacation, and sick leave.
- Professional development opportunities.
- Flexible work environment supportive of work life balance.
To Apply:
Please email your resume, cover letter, 3 professional references, and a writing sample to [email protected] by March 10, 2026.
Equal Opportunity Statement
NNPDF is an equal opportunity employer. We celebrate diversity and are committed to creating an inclusive environment for all employees. All qualified applicants will receive consideration without regard to race, color, religion, gender, gender identity or expression, sexual orientation, national origin, disability, age, or veteran status.
Disclaimer
This job description is not intended to cover every activity, duty, or responsibility required of the employee. Duties may change or be assigned at any time with or without notice to meet the evolving needs of the organization.