About the NRBDO

The Network of Rare Blood Disorder Organizations (NRBDO) is a pan-Canadian coalition of 14 not-for-profit patient organizations representing individuals living with rare blood disorders. We work collaboratively to advance equitable access to care, strengthen patient voices, and improve system-level outcomes for Canadians affected by rare blood conditions. The NRBDO operates within a highly collaborative, advocacy-focused environment, engaging stakeholders across government, health systems, research institutions, and the non-profit sector.

Position Overview

The NRBDO is looking for an experienced, strategic, and collaborative Executive Director to enhance and support the organization’s operations, governance, partnerships, and advocacy efforts. This role is as an independent contractor (approximately 40 hours per month), reporting to the NRBDO Chair and working closely with the Executive Committee, member organizations, and key partners.

The successful contractor will oversee daily operations, support strategic and policy initiatives, build strong external relationships, and ensure the effective coordination of NRBDO activities.

The contractor must maintain their own home office and supply their own equipment. Occasional travel may be necessary and will be reimbursed at NRBDO rates.

Key Responsibilities

Strategic Leadership & Governance

• Support the development, implementation, and achievement of the NRBDO’s annual work plan as per board approval.
• Provide leadership to ensure the operational effectiveness, financial sustainability, and overall success of the organization.
• Work closely with the Chair and Executive Committee to support governance, planning, policy development, and compliance.
• Attend Board meetings and ensure timely and effective reporting.
• Oversee the maintenance of governance documents and organizational procedures.

Stakeholder Relations & Advocacy

• Build, sustain, and strengthen relationships with government representatives, healthcare organizations, member groups, partners, and funders.
• Represent the NRBDO in interactions with regulatory bodies, agencies, donors, supporters, and the general public.
• Act as a key spokesperson for the organization, ensuring consistent, credible, and strategic messaging.
• Support government relations and policy/advocacy efforts related to rare blood disorders and patient-centred care. 

Operations & Organizational Management

• Manage day-to-day operational functions, including administration, financial oversight, communications, and website.
• Ensure the accuracy, integrity, and timeliness of all financial accounting, budgeting, and reporting.
• Monitor project timelines and risks; provide updates and recommendations to the board of directors.
• Ensure organizational compliance with applicable legislation, guidelines, and nonprofit standards.

Partnership Development & Community Engagement

• Lead the development, advancement, and maintenance of strong networks with patient organizations, healthcare providers, and sector partners.
• Support donor stewardship and the development of funding strategies to strengthen the NRBDO’s sustainability.
• Coordinate major initiatives, events, and meetings (including conferences).

Fundraising & Resource Development

• Manage fundraising activities and events to meet budget and program requirements.
• Support grant writing, donor communications, and partnership development.

Qualifications

• Progressive leadership experience in the nonprofit, health, and patient advocacy sectors.
• Knowledge of, or lived experience with, rare blood or bleeding disorders is considered an asset.
• Strong understanding of Canadian health systems, government processes, and stakeholder engagement.
• Proven experience organizing in-person and virtual conferences, including logistics, programming, and vendor coordination.
• Experience writing funding proposals and managing relationships with multiple funders, including reporting requirements.
• Proven experience in organizational management, governance support, and financial oversight.
• Experience reporting to a Board of Directors and working within a governance framework.
• Excellent communication, relationship-building, and diplomatic skills.
• High degree of initiative, professionalism, and independent decision-making.
• Ability to travel within Canada when required.

How to Apply

Please submit your CV and a brief cover letter outlining your interest and relevant experience to by January 23, 2026. We kindly request no agency solicitations.