Job Description
About NORD
The National Organization for Rare Disorders (NORD) is the leading independent nonprofit organization representing all patients and families affected by rare diseases. Come join our team and be part of the transformation and acceleration of research, and the development of evidence-based policy, care support and awareness campaigns to improve the lives of the 30 million Americans impacted by rare diseases. We offer a competitive compensation and benefits package along with a collaborative work atmosphere, opportunities for career growth and development, and flexible telecommuting options. Learn more at www.rarediseases.org.
Position Summary
Reporting to the Director of Membership, the Membership Program Manager supports the day-to-day delivery of NORD’s membership program for more than 350 patient advocacy organizations and a network of over 600 nonprofit leaders. The Program Manager coordinates member education, networking, communications, onboarding, renewals, and engagement activities; maintains accurate membership information and resources; and serves as a responsive point of contact for member organizations. Working closely with the Director of Membership and colleagues across NORD, this role helps ensure a positive member experience and the timely execution of programs that strengthen nonprofit capacity and connection across the rare disease community.
Essential Duties and Responsibilities
Membership Programs and Member Engagement
- Coordinate membership programs, educational offerings, networking opportunities, affinity groups, and capacity-building resources in alignment with the annual Membership Work Plan, including project timelines, logistics, evaluation, and follow-up.
- Serve as a responsive point of contact for member organizations, connecting them with appropriate NORD staff, programs, and resources and supporting a positive experience throughout the membership lifecycle.
- Support membership recruitment, applications, onboarding, renewals, retention, and engagement, including outreach to prospective and current members and representation at selected meetings and events.
Membership Systems and Administration
- Maintain accurate membership records, organizational profiles, contacts, applications, renewals, dues status, user access, and member-facing resources in Salesforce and the Membership Portal.
- Support membership workflows, reporting, data cleanup, system testing, process documentation, and approved improvements in collaboration with the Director of Membership and internal partners.
- Track and report key measures related to recruitment, renewals, engagement, participation, communications, and program delivery.
Program Development, Communications, and Collaboration
- Collaborate with internal subject matter experts and external partners to develop and deliver webinars, resource materials, toolkits, meetings, and other programs supporting nonprofit leadership, governance, research readiness, patient engagement, and organizational capacity building.
- Draft and coordinate member-facing communications, including newsletters, announcements, email campaigns, event invitations, and program updates, and maintain an organized communications calendar and current member-facing content.
- Partner with Marketing and Communications and collaborate across Community Engagement, Educational Initiatives, Medical Affairs, Policy, Research, Information Services, and other departments to promote opportunities and connect members with relevant expertise and initiatives.
Evaluation and Team Contribution
- Collect and organize member feedback, survey findings, participation data, and program outcomes; identify trends and prepare practical recommendations for improving member value, engagement, retention, recruitment, and program effectiveness.
- Contribute to a collaborative, service-oriented team environment by communicating openly, seeking clarification when needed, sharing information, escalating risks or competing priorities, and participating in cross-training and process improvement.
Performs other duties and functions as assigned.
Education and Experience
- Bachelor’s degree in communications, public administration, public health, nonprofit management, or a related field, or an equivalent combination of education and relevant experience.
- At least three years of relevant experience in nonprofit, health, patient advocacy, or science-focused organization; experience working with patient organizations or rare disease communities is preferred.
- Experience coordinating programs, events, communications, or member/customer service activities.
- Experience using a customer relationship management system such as Salesforce is preferred.
Knowledge, Skills and Abilities
- Strong project coordination and organizational skills, including the ability to manage multiple assignments, maintain accurate records, and meet deadlines.
- Excellent written and verbal communication skills, with the judgment to tailor communication for nonprofit leaders, patient advocates, colleagues, and external partners.
- Strong relationship-building and customer service skills, including responsiveness, professionalism, empathy, and follow-through.
- Ability to work collaboratively, ask questions, incorporate guidance and feedback, and appropriately escalate issues or competing priorities.
- Sound judgment, problem-solving skills, attention to detail, and a solutions-oriented approach.
- Ability to work effectively across departments and with colleagues who contribute shared expertise or capacity to membership initiatives.
- Ability to organize and interpret basic program, membership, and communication data to support reporting and improvement.
- Proficiency with Microsoft Office and Teams; familiarity with Salesforce, survey tools, email marketing platforms, and online member portals is preferred.
- Commitment to NORD’s mission and to fostering a respectful, inclusive, and supportive environment for colleagues and members.
Working Conditions
This position may be fully remote. Occasional travel is required.
Essential functions are typically performed in an office setting with a moderate level of noise. Reasonable accommodations may be made to enable individuals with disabilities to perform the essential functions.
NORD is an equal opportunity employer.
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