Posted 7 months ago

The Rare Disease Diversity Coalition (RDDC) is seeking an Associate Director/Program Manager (PM) who is passionate about reducing racial disparities in the rare disease community and is an exceptional project manager, team collaborator, and volunteer leader/organizer.

The coalition brings together rare disease experts, health and diversity advocates, and industry leaders to identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color. Reporting to the Executive Director/Chief Operating Officer of the RDDC, the PM will play a key role in leading projects and implementing strategies to help the RDDC achieve its mission. The PM will have overall strategic and operational responsibility for all program areas. The position will be a part of the senior management team that drives the overall strategy for the organization and represents the RDDC on a local, regional, and national basis. The PM will initially develop deep knowledge of each project, program operations, and business plan, and will focus on the following three areas: program leadership and management, knowledge management, and external relationships.


Program Leadership & Management:

  • Enhance, flesh out, and implement organizational vision as established in the RDDC’s Strategic Plan.
  • Manage and implement the RDDC annual plan and ensure ongoing programmatic excellence.
  • Work in collaboration with the Executive Director and members’ working groups in developing annual plans. Oversee, track, and lead the implementation and progress of working groups’ workstreams and projects. Manage deliverables, metrics, and outcomes reporting; recommend timelines and resources needed to achieve the program goals.
  • Prepare presentations, briefing documents, one-pagers, and other materials to support outreach to and education of key stakeholders and staff on the RDDC’s priorities and potential impact of the RDDC’s programs.
  • Maintain complete and accurate financial records at all times.
  • Attract, develop, coach, and retain high-performance team members, empowering them to elevate their level of responsibility, span of control, and performance.
  • Work with staff to develop systems to ensure consistent, high-quality program management.
  • Provide leadership in the development of inter-team communication and cohesiveness, sustaining culture and supporting staff during organizational growth.

Knowledge Management:

  • Develop the necessary systems, processes, and tools to better support the facilitation, collection, and sharing of knowledge that is generated by the programs.
  • Develop a dissemination system to share organizational learning with a broad range of communities.• Ensure that key project outcomes and/or policy, advocacy, and legislation are evaluated and leveraged for maximum community and organizational impact.
  • Work collaboratively with the senior management team to integrate cross-program activities and functions.

Membership Support:

  • Work in partnership with the Executive Director in developing and maintaining excellent relationships with RDDC members.
  • Provide project management support and coordinate member programs, including onboarding.

Community Outreach:

  • Work closely with the Executive Director to present a strong, positive image of RDDC programs, membership opportunities, and services to relevant stakeholders.
  • Assist the Executive Director in the production of key communications tools to share the RDDC story and successes.
  • Collaborate with the Agency in maintaining the website and oversee promotional activities. Fundraising & External Relationships:
  • Work with the Executive Director in managing relationships with sponsors, and ensure sponsor deliverables are executed.
  • Help research grants, writing and reporting in collaboration with the Executive Director. Additional Responsibilities:
  • Handle additional responsibilities as directed by the Executive Director.

The Associate Director/Program Manager will be thoroughly committed to the RDDC’s strategy and mission. All candidates should have demonstrated leadership, coaching, and relationship management experience and strong demonstrated success managing funder relationships.

Specific requirements include:

  • Bachelor’s degree in a related field (required)
  • Five years’ experience in nonprofit operations preferred, including reporting, member relations, grant writing, and fundraising
  • Three years program or project management experience, including defining objectives, tracking implementation, and measuring impact
  • Unwavering commitment to quality programs and excellence in organizational and project management, with the ability to achieve strategic objectives
  • Experience working with volunteers, nonprofits, and community-based organizations. Ability to work effectively in collaboration with diverse groups of people
  • Integrity, positive attitude, mission driven, and self-directed with demonstrated passion for RDDC’s mission and commitment to working collaboratively with a management team of senior professionals
  • A team player who can interrelate and operate effectively with peers and other associates within a collegial, yet demanding, work environment. Ability to work independently and as part of a team
  • An individual who is able to handle a variety of constituencies, manage multiple tasks, and handle multiple demands simultaneously and thrive in a complex environment with multiple priorities
  • Impeccable integrity
  • Strong analytical skills and basic business intuition
  • Strong communication skills, including public speaking and writing
  • Strong work ethic

About the Rare Disease Diversity Coalition
More than 30 million—or 1 in 10—Americans have a rare disease. For rare disease patients of color, racial disparities have caused a crisis. The Black Women’s Health Imperative launched the Rare Disease Diversity Coalition to address the extraordinary challenges faced by rare disease patients of color.

The RDDC brings together rare disease experts, health and diversity advocates, and industry leaders to identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on communities of color. For more information on the RDDC’s work visit, Rise to Rare at

About the Black Women’s Health Imperative
The Black Women’s Health Imperative is a national non-profit organization dedicated to advancing health equity and social justice for Black women across generations, through policy, advocacy, education, research, and leadership development. The organization identifies the most pressing health issues that affect the nation’s 22 million Black women and girls and invests in the best of the best strategies that will accomplish its goals.

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