Community Relations/Outreach Specialist 1 - 9341S1
As an outcome of the 2019 legislative session, a new law requests the Board of Regents to establish an Advisory Council on Rare Diseases. The advisory council has been charged with advising, consulting, and cooperating with the Minnesota Department of Health, the Advisory Committee on Heritable and Congenital Disorders, and other agencies of state government. The advisory council will work with these agencies to develop information and programs for the public and the state-wide health care community relating to the diagnosis, treatment, and awareness of rare diseases. The University of Minnesota Medical School has been charged with carrying out the duties of this council. This is in partnership with legislators, researchers, clinicians, healthcare systems, foundations, industry and patients/caregivers.
The Rare Disease Advisory Council administrator will have oversight of daily operations. The administrator will work with the designated supervisor, council members, investigators, clinicians, foundations, industry and other members of the Minnesota rare disease community.
Duties and Responsibilities include, but are not necessarily limited to:
Responsible for the daily activities for the council and carrying out those activities including:
Reports back to council
Report to the state legislature, as requested regarding council activities.
Additional required duties:
Responsible for setting up council meetings, setting agendas and writing and distributing minutes for the meetings.
Develop quarterly report and annual reports for the dean of the medical school.
Develop annual report to the legislature.
On a regular basis engage in state-wide community outreach activities with clinicians, researchers and patient advocacy organizations to get their input in regards to council activities and initiatives.
Meet regularly with patients and their caregivers to find out what needs are important to them in regards to council, goals and activities.
Meet with social workers, nurses, pharmacists, physicians and caregivers in healthcare systems to let them know about the Rare Disease Council and find out what is important for them and their roles in working with rare disease patients and families, providers, payers, and researchers.
Establish a network for patients with rare diseases to determine appropriate resources (clinicians, clinical trials, etc), including developing database of providers and ongoing trials for known rare diseases and partnering with national center for rare diseases to share information to better connect patients with resources.
Work closely with Associate Dean for Research on many of the Council's activities.
Partners with patient advocacy groups on work of council.
Work closely with the faculty and students to determine ways that industry can support internships, outreach activities, research.
Competitive wages, paid holidays, vacation and sick leave
Low cost medical, dental, and pharmacy plans
Health care and dependent daycare flexible spending accounts
Excellent retirement plans with employer match
Disability and employer paid life insurance
Wellbeing program with reduced insurance premiums
Tuition reimbursement opportunities covering 75%-100% of eligible tuition
Student loan forgiveness opportunity
Opportunities for growth and promotion
Employee Assistance Program
Bachelor’s degree; at least six years of relevant professional experience, including experience managing multiple, high – profile projects.
Strong written and oral communication skills.
Mature judgment and demonstrated ability to work independently, exercise discretion and manage multiple priorities at once.
Strong interpersonal, organizational and critical thinking skills; adaptability to meet changing demands.
Ability to identify, analyze and address a wide variety of issues and problems in a high-intensity environment.
Collegiality, approachability and diplomacy at all levels of an organization.
An understanding of academic research.
Experience in higher education, or non-profit, or public sector.
Strategic planning skills.
Internal Number: 332158
About University of Minnesota, Twin Cities
The University of Minnesota, founded in the belief that all people are enriched by understanding, is dedicated to the advancement of learning and the search for truth; to the sharing of this knowledge through education for a diverse community; and to the application of this knowledge to benefit the people of the state, the nation, and the world.