Job Overview

The Genetic Services Program Manager will assist with the development and implementation of the FSHD Society’s new sponsored genetic testing program and will lead its ongoing day-to-day operational management. Key responsibilities include program management and reporting, patient and clinician support and education, and results and data management.

The Genetic Services Program Manager reports to and works closely with the Senior Director of Research. They thrive in a multi-disciplinary and collaborative environment, interfacing with marketing, patient education and engagement, research, business development, and administrative team members. They also provide prompt and professional communication with external stakeholders, including patients and families, biopharmaceutical companies, and other patient advocacy organizations.

 Key Responsibilities

1) Program Management

• Assists the FSHD Society with initial program development
• Leads the implementation of program, including development of standard operating procedures and workflows and any necessary training for partners or staff
• Identifies opportunities for and supports process improvement and optimization
• Manages communications and relationships with program vendors and business partners, such as genetic counseling service provider and testing laboratory
• Works closely with registry manager to develop and optimize program workflows integrated with registry
• Generates regular reports and metrics on program
• Leads meetings with program sponsors to report on program status and progress
• Attends conferences and meetings to share and present on program

2) Patient and clinician support

• Provides subject-matter expertise, working with marketing team to develop program advertising materials for patients, families, and healthcare providers
• Provides subject-matter expertise, working with patient engagement team to develop educational materials for patients and families about genetic testing
• Is primary point of contact for all incoming emails and phone calls from patients, families, and clinicians
• Answers questions about FSHD genetics, genetic testing process, results, and sponsored testing program
• Assists patients and families as needed through online informed consent and program registration process
• Maintains thorough knowledge of program protocol and workflows

3) Data management

• Handles genetic test results, including uploading results into the Society’s patient registry, abstracting data, and updating patient registry records
• Works with registry manager to clean and manage genetic data
• Performs basic analyses and interpretation of genetic data in registry
• Supports research projects utilizing genetic data from the registry
• Protects the confidentiality of patient data, releasing information only to authorized persons and in accordance with HIPAA and human subject protection policies and procedures

This description is a summary only and describes the general level of work being performed, it is not intended to be all-inclusive. The duties of this position may change from time to time and/or based on business need. We reserve the right to add or delete duties and responsibilities at the discretion of the supervisor and/or hiring authority.

Experience and Qualifications

• Demonstrated experience in project/program management, minimum two years required
• Experience in clinical genetic counseling, specifically in the neuromuscular field, preferred
• Knowledge of database systems and management, ideally with clinical and/or research data, preferred
• Knowledge and experience with human subject protections and good clinical practice preferred
• Experience with IRB submissions and management, preferred
• Excellent communication skills, both oral and written
• Proficiency in MS Office, including Work, Excel, and PowerPoint
• Strong interpersonal interaction and communication skills
• Ability to tailor complex information in a simple, relevant way for a broad range of audiences
• Strong project and program management skills
• Ability to demonstrate respect, kindness, and professionalism toward patients and families, their rights, and individual needs

Education/Certifications/Licensure

• BS/BA Degree or Equivalent (required)
• Master’s degree in genetic counseling (required)
• Board eligibility/board certification (strongly preferred)

Language Skills

• Ability to write reports and business correspondence
• Ability to effectively present information and respond to questions

Physical and Practical Demands

The physical demands described here are representative of those that must be met by an employee to successfully perform the essential functions of this job. Reasonable accommodations may be made to enable individuals with disabilities to perform the essential functions.

• Must be able to see and read fine Employee will have close visual contact with a computer monitor constantly.
• Must be able to communicate utilizing a
• Mobility to allow access to all parts of the
• Must be willing and able to learn all necessary computer
• While performing the duties of this job, the employee will sit for long periods of time, and may use repetitive wrist and hand motions involved in sorting and handling documents. The employee is regularly required to reach, with hands and arms.

No phone calls, please.

The FSHD Society is an equal opportunity employer, which welcomes qualified applicants of all races, ethnicities, genders, and sexual orientations.

How to Apply

Please send the following: (a) one-page cover letter, (b) resumé, and (c) the names and telephone numbers of three references by e-mail to: careers@fshdsociety.org with the job title in the subject line.

Salary Range

$70,000-$85,000