CONTRACT VIRTUAL COMMUNITY CONFERENCE COORDINATOR POSITION

MISSION Our mission is to advance research, drug development, and possible treatments for GM1 Gangliosidosis, an ultra-rare lysosomal storage disease that primarily impacts babies and children.

GM1 destroys the brain and spinal cord and is ultimately fatal in children. Our work is guided by the belief that all those suffering from this horrendous disease deserve treatment.

Treatments and discoveries associated with rare diseases can contribute to advancements with broad ramifications to the entire field of medicine.

ORGANIZATION OVERVIEW

The Cure GM1 Foundation was founded in April of 2015. Cure GM1 aims to advance several possible treatments and approaches. In addition, we help support and communicate with the GM1 patient community every day.

OUR PROGRAM

To date, the primary source of funds has been individual donors via grassroots fundraising. Cure GM1 is in contact with the largest number of patients suffering from GM1 gangliosidosis of any entity worldwide. Cure GM1 is currently collaborating with multiple parties on numerous projects to help advance possible GM1 treatments and to raise awareness. Recent initiatives also include enzyme replacement therapy research, medical records collection, newborn screening, a caregiver preferences study, and an Externally Led Patient-Focused Drug Development meeting with

FDA. CONTRACT VIRTUAL COMMUNITY CONFERENCE COORDINATOR POSITION

Assist in organization, coordination, planning, and execution of annual conference and/or online recordings Speaker liaison and speaker technical support for recording and conference platform Calendar invites, email, and assistance with event marketing, and overall agenda and event schedule Conference vendor communication and coordination with Cure GM1 Assemble and ship conference gift boxes for family attendees Skills & Experience Authentic connection to rare disease and/or healthcare experience preferred Nonprofit event planning and execution experience preferred Self-motivated and proactive communicative collaborator Exceptional relationship-building and interpersonal skills Excel, Word, Canva, Photoshop, GSuite, Powerpoint Very tech savvy, Zoom, Webinar, video conferencing event coordination required Excellent verbal and written communication skills—inspiring, eloquent, and persuasive. Ability to think strategically while executing tactically, in a lean and resource-constrained organization. Independent, hands-on and motivated individual Highly disciplined, with superior organizational skills and unwavering attention to detail. Constant learner who is proactive, solutions-oriented; approaches all aspects of work with a growth mind-set. Bachelor's degree required; graduate degree appreciated.