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

The Director of Philanthropy is responsible for advancing NORD’s fundraising strategy with a focus on growing individual giving and foundation support. The Director will lead the development and implementation of strategies to engage donors, secure unrestricted support, and strengthen relationships with foundations and individual contributors. Reporting to the Vice President of Development, the Director of Philanthropy will oversee a small team, cultivate donor relationships, and drive NORD’s philanthropic initiatives to meet fundraising goals.

Essential Duties and Responsibilities

Develop and execute strategic plans to grow NORD’s individual giving program, including regular monthly giving, the annual fund campaign, and donor pipelines for major gift prospects.
Develop and implement an Annual Fund campaign and donor communications calendar to strengthen relationships and encourage regular giving.
Oversee the planning and execution of fundraising campaigns tied to key initiatives such as Rare Disease Day (RDD), Giving Tuesday, Centers of Excellence (COEs), and grant opportunities, prioritizing unrestricted giving.
Prepare compelling proposals, presentations, and donor-facing materials to effectively communicate funding opportunities and the impact of philanthropic investments.
Build and maintain prospect lists to expand the donor pipeline, ensuring robust engagement and long-term support.
Cultivate and maintain relationships with foundation program officers, ensuring strong partnerships and alignment with NORD’s mission and funding priorities.
Lead outreach to new foundation prospects, developing strategies to secure programmatic and unrestricted support.
Lead and support donor meetings, presentations, and events, both virtually and in-person, as required to cultivate and steward relationships.
Guide and support the Chief Executive Officer in her role as a chief spokesperson and fundraiser. Utilize key leadership's time and talents appropriately with respect to cultivation, solicitation and stewardship efforts.
Supervise and manage a small team responsible for grant writing, donor acknowledgments, database entry, and report generation, ensuring high-quality output and team collaboration.
Ensure the department and organization are well-informed on philanthropic best practices and trends, incorporating them into strategies and operations.
Establish and maintain strong relationships with donors, effectively articulating NORD’s mission, programs, and impact to inspire philanthropic investment.
Convert restricted opportunities into unrestricted contributions by aligning donor interests with organizational needs and goals.
Utilize Salesforce and other tools to track donor interactions, manage prospect pipelines, and report on progress toward fundraising goals.
Monitor and report on fundraising metrics, providing insights and recommendations for continuous improvement.
Performs other duties and functions as assigned.

Education/Experience

Bachelor’s degree or equivalent experience required; advanced degree or certifications in fundraising or nonprofit management preferred.
Minimum of 7 years of experience in fundraising, philanthropy, or development, with a proven track record in individual giving and foundation relations.
Experience managing teams and overseeing multiple facets of a philanthropic program.
Familiarity with healthcare, nonprofit, or rare disease sectors is highly desirable.

Knowledge, Skills and Abilities

Strong leadership and strategic planning skills with the ability to drive results and meet ambitious fundraising goals.
Exceptional relationship-building and interpersonal skills, with a demonstrated ability to engage and inspire donors and foundation representatives.
Excellent written and verbal communication skills, including experience preparing proposals and presentations.
Proficiency in CRM tools (e.g., Salesforce) and other donor management systems.
Ability to manage multiple projects and deadlines with attention to detail and accuracy.
Knowledge of philanthropic best practices and emerging trends in individual and foundation giving.
Ability to travel for donor meetings, events, and other engagements as necessary.

Working Conditions

This position may be hybrid or fully remote with a preference for candidates based out of Danbury, CT, Washington, DC or Quincy, MA.

Reasonable accommodation may be made to enable individuals with disabilities to perform the essential functions of this position.

NORD is an equal opportunity employer. All applicants will be considered for employment without attention to race, color, religion, sex, sexual orientation, gender identity, national origin, veteran or disability status.

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