Program Coordinator

Reports to: Research Programs Officer

Location: Remote (U.S.- based)

About the FSHD Society

The FSHD Society is a leading non-profit organization dedicated to accelerating the development of treatments and, ultimately, a cure for facioscapulohumeral muscular dystrophy (FSHD). Our mission is to serve as the hub for the FSHD community by fostering collaboration, empowering individuals and families affected by the disease, and driving innovative research. Through our global advocacy, education, and research initiatives, we strive to improve the lives of those impacted by FSHD while working towards a future free from its constraints. Over the last three decades, the work of the FSHD Society has accelerated major advancements in the development of treatments and a cure to end the pain, disability, and suffering endured by one million people worldwide who live with FSHD.

Job Overview

The Program Coordinator performs day-to-day operational tasks for the FSHD Society’s research, education, and global initiatives. This role ensures efficient project execution across multiple cross-functional teams, supports communication and collaboration, internally and externally, and helps maintain accurate, timely information across all research-related channels. The ideal candidate is highly organized, detail-oriented, proactive, and comfortable working in a fast-paced, mission-driven environment.

Travel Requirement: This role requires periodic travel throughout the year for staff meetings and major events.

Key Responsibilities

Project, Team, and Meeting Coordination

• Work closely with the Research Programs Officer to manage cross-functional project timelines, milestones, key tasks, and interdependencies using Asana
• Schedule meetings, prepare agendas, and take minutes for key cross-functional teams
• Record action items from meetings, assign tasks, and follow up with team members as needed
• Coordinate project timelines and logistics for the International Research Congress (IRC) under guidance from the Research Programs Officer and Director of Education
• Support the abstract management process for the annual IRC
• Manage the online platforms for IRC and FSHD Connect conferences using Zoom Events
• Coordinate Zoom sessions, webinars, meetings, and website calendar scheduling for FSHD University and other education-focused events
• Support logistics for multiple small hybrid meetings held throughout the year
• Maintain internal lists of annual scientific and advocacy conferences, coordinate with team leads on the Society’s presence, and track abstract, booth, and registration deadlines

Research Information Management

• Regularly review and update information on research and ongoing clinical trials across channels, including website, print, and other sources
• Gather timely updates from internal teams and biopharma partners to ensure accuracy in all materials
• Respond to general research and education questions from shared email inboxes, coordinating with team members as needed

Program and Platform Support

• Manage vendors and reporting for TestFSHD, the Society’s genetic testing program
• Support our patient registry, BetterLife (BLF), with beta testing, quality checks, and focus group meeting coordination
• Manage incoming requests from research teams seeking help with study recruitment or other support; Follow established SOPs to ensure requests are reviewed, routed, and addressed promptly

Communications and Administrative Support

• Prepare and send mass email communications related to education, research, BetterLife, and conferences
• Provide administrative and logistical support across key initiatives
• Provide scheduling and administrative support to senior scientific leadership

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

• Strong project management skills; project management certification or training preferred
• Familiarity with project management platforms (e.g., Asana)
• Excellent oral and written communication skills
• Proficient in MS Office (Word, Excel, PowerPoint)
• Strong interpersonal interaction and communication skills
• Highly organized, able to prioritize tasks, and manage multiple projects simultaneously
• Quick to learn and adapt to new technology platforms
• Exceptional attention to detail
• Ability to demonstrate respect, kindness, and professionalism toward patients and families, their rights, and individual needs
• Self-motivated, proactive, and enthusiastic

Education/Certifications/Licensure

• BS/BA Degree or Equivalent

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 print. Employee will have close visual contact with a computer monitor constantly.
• Must be able to communicate utilizing a telephone.
• Must be willing and able to learn all necessary computer functions.
• While performing the duties of this job, the employee is regularly required to lift boxes weighing at least 20 lbs., 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.

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

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