Program Manager

Job Type

Full Time




55 Kenosia Ave
United States



The National Organization for Rare Disorders (NORD) is the leading nonprofit organization representing the 30 million Americans who have rare diseases and those seeking to improve their lives. Since 1983, NORD has served as the voice of the rare disease patient community, providing advocacy for fair and enlightened public policies; education for patients, their families, medical professionals and the public; and leadership and representation for rare disease patient organizations. NORD supports medical research to promote the development of safe, effective diagnostics and treatments, and it provides a broad array of patient assistance programs to assure patient access to treatments. Learn more at


The program manager will be primarily responsible for overseeing NORD’s new rare disease centers of excellence initiative. The goal of this program is to provide a network of comprehensive medical homes for patients seeking diagnosis, treatment and care for their rare disease. The centers will serve as a model for standards of clinical excellence, education and innovation in rare diseases.

The program manager will help to identify issues, provide solutions, delegate tasks and monitor progress to keep the organization on schedule and budget for the centers of excellence initiative, and other projects as assigned. This position will require frequent communication with other staff, departments and external partners.


Develop and execute plans to raise awareness of and grow the network of centers of excellence

Research grants and new opportunities that support business plans

Stay current on industry standards and trends

Create and execute project plans with clear goals and KPIs

Manage day-to-day operational tasks related to scope of work

Minimize NORD’s exposure and risk, ensuring management is aware of potential risks and propose solutions

Ensure proper documentation is complete, current and stored appropriately

Plan and facilitate internal and external status meetings

Maintain and oversee deliverables and budgets

Work closely with accounting to ensure billing and invoicing is timely and accurate

Support development staff in developing marketing collateral and in sales calls or meetings

Support the development or enhancement of policies and procedures

This role will interface directly with key external stakeholders and effectively:

Develop and manage close business relationships

Conduct on-site or off-site business review meetings

Review and respond to program related communications in a timely and professional manner

Identify and respond to requests and issues promptly, ensuring confidence in NORD’s delivery of programs and services



5 years of experience in program management from design and planning through successful implementation, including process documentation and post-assessment

Knowledge of healthcare industry, healthcare delivery systems and cooperative medicine preferred

Specialized understanding or working knowledge of rare diseases and undiagnosed genetic conditions, genetic testing, clinical trials, and longitudinal studies preferred but not required


Education and Training:

Project Management Certification or CAPM preferred

Healthcare or patient advocacy experience preferred

Bachelor’s degree required. An advanced degree (Master’s level) in a relevant field (e.g., business, healthcare administration, public health, etc.) is strongly preferred

Knowledge, Skills and Abilities

A passion for NORDs mission

Strong process and analytical skills with proven ability to interact at all levels of the organization and with a variety of stakeholder groups

Exceptional organizational skills

Results-oriented work ethic

Ability to handle confidential and proprietary information

Ability to manage multiple projects and tasks to demanding, time-sensitive deadlines

Strong written, verbal, and interpersonal communication skills

Strong budgeting and forecasting skills

Excellent account and/or client management skills

Excellent MS Office skills

Able to analyze, evaluate and move quickly to support rapid decision making

Effective team management and conflict management

High level of professional integrity

Able to thrive in the creative, fast-paced, and highly professional corporate culture of NORD that emphasizes excellence, collegiality and teamwork in pursuit of its nonprofit mission.

Working Conditions

Essential functions are typically performed in an office setting with low noise levels. Reasonable accommodations may be made to enable individuals with disabilities to perform the essential functions.

Occasional travel, including business meetings and conferences, as required.



Strategy is a program department within NORD whose goal is to inform critical institutional and program decision making, strengthen the design and implementation of NORD’s work, and generate knowledge that advances NORD’s program objectives. We pursue this goal by (1) enhancing the organization’s efforts to generate ideas for new initiatives and larger bodies of work; (2) applying a wide range of planning approaches that help turn ideas into effective action; (3) using evaluation to improve program performance and inform decision making, (4) ensuring that staff have access to information that meets their needs to design, implement, and manage high performing strategies, initiatives, and campaigns, and (5) collaborating with colleagues in preparing a wide range of planning and other types of documents for consideration by NORD’s board of directors.

Planning and Project Development:

Planning and project development is part of the Strategy department within NORD’s program division. The unit’s primary aims are to strengthen the organization’s efforts to generate ideas for new initiatives and larger bodies of work; apply a wide range of planning approaches that enhance the organization’s capacity to undertake projects that achieve programmatic and institutional goals; oversee the launch of initiatives resulting from the approval of new strategies; engage with programs and projects to review and revise existing strategies and initiatives; and provide guidance and feedback to the Chief Strategy Officer about the suitability of a range of planning proposals, including idea agendas, strategy papers, and write ups.

Professional Level


Minimum Education Required

No requirement

How To Apply

Please apply online at