Coordinator Remote Community Engagement Jobs (NOW HIRING)

Growing patient advocacy non-profit seeks a motivated Community Engagement Coordinator (remote or in person) to help expand our mission-driven organization. Work in a positive environment knowing that you are changing lives and helping people every day!

Dysautonomia International is a global non-profit that works to improve the lives of over 70 million individuals worldwide living with autonomic nervous system disorders through cutting-edge medical research, clinician education, public awareness, patient empowerment, and legislative advocacy programs. We offer peer-led support groups in all 50 US states, over 80 other countries, and special interest support groups for Men, Spouses, Teen, College, Black, LGBT+ and US Military Families. We also host the largest conference on autonomic nervous system disorders annually, with 400-600 in person guests and up to 10,000 virtual participants.

We are seeking an individual with patient support and community engagement experience for the position Community Engagement Coordinator.

Responsibilities include:

• Ensure positive, supportive, medically accurate environment on Dysautonomia International online support groups serving over 100,000 patients and caregivers;
• Coordinate virtual and in person meet ups for all Dysautonomia International support groups;
• Recruit, train and supervise over 150 Dysautonomia International support group volunteers annually;
• Develop tools and resources support group leaders and other volunteers need to be effective in their advocacy;
• Obtain informal and structured feedback from dysautonomia community members to ensure we are meeting the needs of our community;
• Work with regional support group leaders to maintain and update a list of medical professionals who can assist people with autonomic nervous system disorders in their region;
• Respond to email, phone, and social media inquiries requesting patient or caregiver resources or support;
• Assist the Communications Director with distribution of event and educational information to support groups and volunteers; and
• Assist with other projects as needed in our growing non-profit.

Education, experience, and skills required:

• Bachelor’s degree in communications, health policy, or education, or equivalent experience, with strong understanding of patient community dynamics;
• Minimum of three years-experience managing or leading patient support communities;
• Minimum of three years of experience using Facebook groups, Facebook events, and creating Facebook content;
• Experience creating educational social media graphics/short videos;
• Experience working with Zoom to create and host virtual meetings;
• Good working knowledge of autonomic nervous system disorders and common treatment approaches;
• Commitment to and demonstrated history of sharing accurate information about dysautonomia and related medical conditions;
• Ability to perform and track multiple tasks concurrently with ease and professionalism;
• Must be detailed-oriented and efficient in meeting deadlines in a fast-paced environment;
• Ability to communicate clearly and effectively with a broad range of stakeholders from diverse backgrounds;
• Experience with public speaking, and comfortable engaging in professional public speaking on Zoom or at in person events as a regular part of this position;
• Must have excellent interpersonal skills with full command of the English language, bi-lingual communication skills is a plus; and
• Ability to travel out of state or internationally 2-3 times per year for several days at a time to support the organization's in person events.

Location & Schedule
This is a full-time Monday-Friday, 9AM-5PM Eastern position that can be done remotely from any location in the US. Must reside in the US and be lawfully permitted to work in the US. Occasional evening and weekend hours may be necessary for events. Must be able to travel 2-3 times per year to assist with in person events, such as the organization’s multi-day Annual Conference or Dysautonomia Advocacy Day on Capitol Hill. Travel expenses (transportation, lodging & meals) will be covered by the organization.

Salary & Benefits
The starting salary for this position is $50,000 annually, plus $50 per month stipend to support your home office. Three weeks of paid vacation and paid time off for holidays are provided. Due to our small staff size, the organization does not provide health insurance at this time, but we do offer pre-tax reimbursement of up to $300 per month for qualified health insurance and healthcare costs as part a QSHERA plan, which is free for all full-time employees to enroll in.

Start Date
We are looking for someone to begin in mid-August 2026.

How to Apply
Please submit your resume and a cover letter letting us know why you are interested in this position through ZipRecruiter. Applications without a cover letter will not be reviewed. If you can not upload your cover letter to ZipRecruiter, you can email it to us: info (at) dysautonomiainternational (dot) org. ZipRecruiter will not allow us to add the actual email address.

Equal Opportunity Employer
Dysautonomia International is an equal opportunity employer fully committed to creating an environment and team that represents a variety of backgrounds, perspectives, and experiences. Dysautonomia International does not discriminate on the basis of race, color, national origin, religion, sex, disability, age, sexual orientation, military status, veteran status, genetic information, gender identity and expression, or any other characteristic protected by applicable federal, state, or local law.

Dysautonomia International is the leading 501(c)(3) non-profit organization that advocates for over 70 million people worldwide living with autonomic nervous system disorders, which are collectively known as dysautonomia. The organization funds innovative medical research, physician education, public awareness and patient empowerment programs around the world to improve the lives of people living with dysautonomia.