Canadian Rare Disease Network Manager, Medical Genetics

Alberta, Canada

Job Description


Position Overview

The Department of Medical Genetics in the Cumming School of Medicine invites applications for a Canadian Rare Disease Network Manager. This Full-time Fixed Term position is for approximately 1 year (based on length of grant funding), with the possibility of extension.

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/or the not-for-profit setting considered an asset
  • Regulatory knowledge, including regulations related to rare disease research, patient privacy (e.g., HIPAA) or clinical trials (e.g., Good Clinical Practice) considered an asset
  • Ability to stay updated on advancements as they relate to rare diseases and drive innovation within the network is essential
  • Strong problem-solving skills, adaptability, and attention to detail
Application Deadline: November 24, 2023

We would like to thank all applicants in advance for submitting their resumes. Please note, only those candidates chosen to continue on through the selection process will be contacted.

Additional Information

This position is classified in the Research Career Band, Level 4 of the Management and Professional Staff Career Framework.

To find out more about management and staff opportunities at the University of Calgary and all we have to offer, view our . For more information visit .

The University strongly recommends all faculty and staff are fully vaccinated against COVID-19.

About the University of Calgary

The University of Calgary is Canada\'s leading next-generation university - a living, growing and youthful institution that embraces change and opportunity with a can-do attitude. Located in the nation\'s most enterprising city, the university is making tremendous progress on its Eyes High journey to be recognized as one of Canada\'s top five research universities, grounded in innovative learning and teaching and fully integrated with the community it both serves and leads. The University of Calgary inspires and supports discovery, creativity and innovation across all disciplines. For more information, visit .

The University of Calgary has launched an institution-wide in line with the foundational goals of , committing to creating a rich, vibrant, and culturally competent campus that welcomes and supports Indigenous Peoples, encourages Indigenous community partnerships, is inclusive of Indigenous perspectives in all that we do.

As an equitable and inclusive employer, the University of Calgary recognizes that a diverse staff/faculty benefits and enriches the work, learning and research experiences of the entire campus and greater community. We are committed to removing barriers that have been historically encountered by some people in our society. We strive to recruit individuals who will further enhance our diversity and will support their academic and professional success while they are here. In particular, we encourage members of the designated groups (women, Indigenous peoples, persons with disabilities, members of visible/racialized minorities, and diverse sexual orientation and gender identities) to apply. To ensure a fair and equitable assessment, we offer accommodation at any stage during the recruitment process to applicants with disabilities. Questions regarding [diversity] EDI at UCalgary can be sent to the ( ) and requests for accommodations can be sent to Human Resources ( ).

Do you have most but not all the qualifications? Research show that women, racialized and visible minorities , and persons with disabilities are less likely to apply for jobs unless they meet every single qualification. At UCalgary we are committed to achieving equitable, diverse, inclusive and accessible employment practices and workplaces and encourage you to apply if you believe you are right for this role.

We encourage all qualified applicants to apply, however preference will be given to Canadian citizens and permanent residents of Canada.

University of Calgary

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Job Detail

  • Job Id
    JD2253156
  • Industry
    Not mentioned
  • Total Positions
    1
  • Job Type:
    Full Time
  • Salary:
    Not mentioned
  • Employment Status
    Permanent
  • Job Location
    Alberta, Canada
  • Education
    Not mentioned