Job Description Summary

The Public Information Director for South Carolina’s Rare Disease Advisory Council (RDAC) reports directly to the SCTR Recruitment Manager with a dotted reporting line to the SCTR SUCCESS Center Director and RDAC Chair. This position interacts regularly with Executive Leadership, SCTR’s Chief Operations Officer, Science Development Officer and Finance Office to support the Program’s overarching mission and aims. The Rare Disease Public Information Director is an integral member of the SCTR team and interacts with internal, external, state, and national stakeholders. This position is responsible for the organization of statewide symposia, website content development, and dissemination of information to the public through news media. establishment of a patient facing Rare Disease registry in compliance with Federal, State, and local regulations and policies; executive leadership meeting planning and programmatic communications; metrics tracking and reporting. This position is primarily remote with in-person attendance at on-campus meetings as required. Overnight travel within the state of South Carolina is also necessary.

Entity

Medical University of South Carolina (MUSC - Univ)

Worker Type

Employee

Worker Sub-Type​

Research Grant

Cost Center

CC001064 COM SCTR Operations CC

Pay Rate Type

Salary

Pay Grade

University-06

Pay Range

46,655.00 - 66,488.00 - 86,321.000

Scheduled Weekly Hours

40

Work Shift

Job Description

Job Description Summary

The Public Information Director for South Carolina’s Rare Disease Advisory Council (RDAC) reports directly to the SCTR Recruitment Manager with a dotted reporting line to the SCTR SUCCESS Center Director and RDAC Chair. This position interacts regularly with Executive Leadership, SCTR’s Chief Operations Officer, Science Development Officer and Finance Office to support the Program’s overarching mission and aims. The Rare Disease Public Information Director is an integral member of the SCTR team and interacts with internal, external, state, and national stakeholders. This position is responsible for the organization of state-wide symposia, website content development, and dissemination of information to the public through news media. establishment of a patient facing Rare Disease registry in compliance with Federal, State, and local regulations and policies; executive leadership meeting planning and programmatic communications; metrics tracking and reporting. This position is primarily remote with in-person attendance at on-campus meetings as required. Overnight travel within the state of South Carolina is also necessary.

Job Duties:

(25%) Serve as the Public Information Director and Project Manager of the state-wide Rare Disease Program and Advisory Council responsible for creating long- and short-term project plans based on program aims and goals based on the State’s documented proviso. Responsibilities include establishing targets for milestones and adhering to deadlines as directed by Council, effectively and efficiently review assignments and organize outstanding action items through to resolution; Developing and planning publicly attended, quarterly RDAC meeting schedules, agendas, writing and disseminating detailed meeting minutes included posting them on the public-facing website.

(20%) Outreach and Marketing. Execute the RDAC’s communications strategy for internal and external audiences as it relates to the delivery of information, educational information and/or marketing (traditional and digital), social media strategies, graphic design and

branding to ensure accuracy, consistency, clarity and effectiveness. Work collaboratively with leadership and external counterparts including the National Organization for Rare Disorders (NORD) and other RDAC’s across the country and stay abreast of national and state priorities, Administer, create, and update the program website content to ensure publicly accessible, online resources and relevant descriptions are accurate and comply with the required accessibility of digital content standards.; Monitor website analytics to assess the effectiveness of communication delivery for continuous quality improvement; Recommend and contribute to new resources to enhance online messaging relevant for the Rare Disease community. Communicate proactively and professionally to identify synergies and opportunities for cross programmatic collaboration and improved efficiency. In collaboration with at the SCTR business office, to manage the purchase of media buying requests in alignment within budget to strategically reach South Carolina’s rare disease community.

(20%) Event Management. Plan and execute all activities related to South Carolina’s annual Rare Disease Day event. This hybrid (in person/virtual) event will be held at varying collaborating sites across the state. Activities include but are not limited to coordination, logistics, and communication activities. Collaborate with program leaders to develop event agendas, materials, and registration tools; Create and update reports to monitor registration and track event metrics. Organize, prepare, and manage communication to registrants, presenters, patient-participants, and other guests on timing and presentation requirements. Coordinate dissemination and receipt of event evaluations and compile follow-up information to be utilized for reporting requirements. In collaboration with the SCTR Finance office, organize travel and reimbursements for honoraria, catering, travel, and other expenses related to the event.

(15%) Develop and implement a self-reported Rare Disease patient contact registry; Maintain and enhance the current Rare Disease Needs assessment in adherence with Federal, State, and local regulations and policies that support direct communication with registrants to facilitate awareness of clinical trial opportunities and/or survey distribution/completion. In collaboration with SCTR’s Recruitment Program, develop and execute recruitment and dissemination activities aimed at increasing patient awareness, interest and engagement from the state-wide community.

(10%) Metric tracking and reporting: Under the direction of the RDAC leadership, collect, track and synthesize relevant RDAC information and data as required to draft the annual report for SC State legislature. Leverage the use of REDCap to develop program databases and surveys to support metrics tracking to establish standardized reports, analytics and

other relevant information to inform ongoing registry progress and monitor ongoing quality control.

(10%) Serve as a subject matter expert and resource for those seeking information about the RDAC and other resources, tools and information on Rare Disease relevant for the state of South Carolina. Monitor, triage and track all program inquiries through to resolution. Manage program list serves for email and other relevant communications to stakeholders as needed. Support special projects- Implementation of other initiatives determined by the Rare Diseases Advisory Council and contributes to other duties as assigned by the program leadership.

Minimum Experience and Training Requirements:

A bachelor’s degree and two years professional experience related to the development and dissemination of informational material.

Preferred Experience & Additional Skills:

Knowledge of basic journalistic principles and practices for information dissemination. Candidates with a master’s degree and experience in project management in academic health sciences, public health, or higher educational environments will be given priority.

Ability to serve as RDAC spokesperson and in collaboration with leadership, participate in interviews and formal inquiries. Ability to establish and maintain relationships with local, state and national media. Knowledge of social media platforms and how to use those platforms to disseminate information and communicate with the public. Knowledge of principles and methods of planning, conducting and supervising large-scale public relations and outreach programs. Ability to write, edit and produce publications for various formats and mediums. Ability to effectively communicate orally and through the written word. Ability to understand and maintain agency brands and the accurate deployment of those brands in various marketing collateral outputs. Ability to coordinate and prioritize a variety of daily responsibilities and functions and effectively pivot to accommodate changing program priorities while meeting overarching goals; understand the overall mission and the individual goals of the program to anticipate needs and identify opportunities for improved communication and collaboration.

Additional Job Description

Minimum Requirements: A bachelor’s degree and two years professional experience related to the development and dissemination of informational material. Physical Requirements: (Note: The following descriptions are applicable to this section: Continuous - 6-8 hours per shift; Frequent - 2-6 hours per shift; Infrequent - 0-2 hours per shift) Ability to perform job functions while standing. (Frequent) Ability to perform job functions while sitting. (Frequent) Ability to perform job functions while walking. (Frequent) Ability to work indoors. (Continuous) Ability to work outdoors in all weather and temperature extremes. (Infrequent) Ability to work in confined/cramped spaces. (Infrequent) Ability to perform job functions from kneeling positions. (Infrequent) Ability to bend at the waist. (Infrequent) Ability to squat and perform job functions. (Infrequent) Ability to perform ’pinching’ operations. (Infrequent) Ability to fully use both hands/arms. (Continuous) Ability to perform repetitive motions with hands/wrists/elbows and shoulders. (Frequent) Ability to reach in all directions. (Continuous) Possess good finger dexterity. (Continuous) Ability to lift and carry 15# , unassisted. (Infrequent) Ability to lift objects from floor level to height of 36 inches, to 15#, unassisted. (Infrequent) Ability to lower objects, to 15 #, from height of 36 inches, unassisted. (Infrequent) Ability to push/pull objects to 15 #, unassisted. (Infrequent) Ability to maintain 20/20 vision, corrected. (Continuous) Ability to see and recognize objects close at hand. (Continuous) Ability to see and recognize objects at a distance. (Continuous) Ability to match or discriminate between colors. (Frequent) Ability to determine distance/relationship between objects; depth perception. (Continuous) Good peripheral vision capabilities. (Continuous) Ability to maintain hearing acuity, with correction. (Continuous) Ability to hear and/or understand whispered conversations at a distance of 3 feet. (Continuous) Ability to perform gross motor functions with frequent fine motor movements. (Continuous) Ability to work in dusty areas (Infrequent)

If you like working with energetic enthusiastic individuals, you will enjoy your career with us!

The Medical University of South Carolina is an Equal Opportunity Employer. MUSC does not discriminate on the basis of race, color, religion or belief, age, sex, national origin, gender identity, sexual orientation, disability, protected veteran status, family or parental status, or any other status protected by state laws and/or federal regulations. All qualified applicants are encouraged to apply and will receive consideration for employment based upon applicable qualifications, merit and business need.

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