Canadian Rare Disease Network Manager, Medical

7 months ago

Calgary, Canada The University of Calgary Full time

**Position Overview**

CRDN Manager to guide and support the development and implementation of the Canadian Rare Disease Network (CRDN), a pioneering initiative that will bring Canada to the forefront as a global leader in rare disease research, care, and innovation.

Reporting to the Chair of the CRDN and working collaboratively with the Steering Committee, Working Groups and multiple high-level stakeholders in academia, healthcare, the community, government bodies, and industry across Canada and beyond, this position will be responsible for planning, co-development, implementation, and management of the CRDN. This role will convene and support cross-sectoral and multi-provincial/territorial groups to develop strategies, processes, and procedures for this collaborative, virtual network that accelerates scientific discoveries, enhances patient care, fosters collaboration and knowledge exchange, and drives innovation for children and adults affected by complex and rare diseases.

Overtime may be required on occasion. Occasional provincial, national, and international travel may be required.

**Position Description**

**Summary of Key Responsibilities** (job functions include but are not limited to):
Network Development and Management
- Develop and implement the CRDN which will act as a virtual network and hub by linking existing rare disease resources and initiatives across the country in a uniquely collaborative effort
- Develop and communicate a clear strategic vision and mission for the CDRN in consultation with the Steering Committee
- Responsible for the development and updating of the networks strategic plan to align the capabilities, needs and shared objectives of the rare disease community across Canada
- Makes decisions that require developing new options to solve complex problems
- Facilitate stakeholder engagement and strategic priority/direction setting
- Guide and lead the development and implementation of the network's infrastructure and initiatives to drive its goals
- Manage and secure resources and funding through grants and partnerships to support the network's operations and initiatives
- Lead and collaborate in the development of novel ideas associated with growth and sustainment of the network

Coordination and Collaboration
- Build and nurture relationships with rare disease stakeholders in academia, healthcare, patient advocacy groups, government and industry in Canada and beyond
- Explore opportunities for international collaboration with rare disease organizations in other countries to share knowledge and best practices
- Facilitate effective communication and foster collaboration among diverse rare disease stakeholders to drive collective efforts
- Represent the CRDN at relevant conferences, meetings, and industry events to enhance its scope and impact and stay informed about the latest developments and opportunities
- Act as a convener and enabler to connect the rare disease community across sectors and bring out a unified voice
- Ensure high degree of confidentiality and integrity, demonstrate discretion, professionalism and good judgement in dealing with confidential information

Communication and Outreach
- Develop and execute communication strategies and materials to raise awareness about rare diseases and CRDN's work
- Engage with the public, patients, caregivers, healthcare professionals, researchers, industry leaders, government, and the media to promote the organization's mission
- Organize and participate in community engagement events, such as group gatherings and rare disease awareness campaigns

**Qualifications / Requirements**:

- Bachelors Degree; advanced degree preferred (Master or PhD level), ideally in a health-related discipline (e.g., healthcare management, public health, life sciences or related discipline)
- Previous leadership and management experience, including setting strategic goals, organizational management, engagement of multi-site, cross-functional and cross-sectoral stakeholders, and sustainability planning
- Strong project management and organizational skills required (PMP considered an asset), with the ability to handle multiple tasks and timelines
- Must possess excellent interpersonal and communication skills, with the ability to interact with healthcare professionals, researchers, patient and family representatives and/or patient advocacy groups, policymakers, and industry leaders to foster collaboration and partnerships
- Proven ability to develop internal and external collaborations and strong cultural competence
- Excellent research and technical writing skills with ability to write internal operational documents required
- A sound understanding of academic research or healthcare systems and operations
- Expertise in grant writing and fundraising strategies required
- Experience collecting, managing, and analyzing data to evaluate network performance and outcomes and optimize processes required
- Experience in public relations, marketing and

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