Work With Us

Reports to: Community Education & Support Director
Location: UK or US, Remote Based
Contract: Full-Time, 9am-5pm (GMT/EST)
Salary: £26,000 / $34,000 per annum (depending on location)
Revised: June 2024

Organization Overview

The Ehlers-Danlos Society’s mission is dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We support the development of effective and equitable EDS and HSD therapies and work collaboratively to improve the lives of individuals affected by EDS and HSD.  

Our vision is to create a world in which each person living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders has the right treatment and care at the right time for their specific needs.  

Overview of Responsibilities

The Content Coordinator will collaborate with internal and external stakeholders to produce accessible, relevant, and practical educational resources for people living with EDS and HSD, including content for The Ehlers-Danlos Society’s website, app, and social media platforms. The Content Coordinator will focus on making scientific information easier to understand, with an emphasis on written and visual content, awareness materials, and content for kids and teens with EDS and HSD. 

Key Responsibilities/Essential Functions

This role has four (4) core areas of ownership, the responsibilities involved include, but are not limited to:  

Practical Resources 

• Collaborate with the Senior Content Coordinator to develop accessible, relevant, and practical educational resources, including webpages, printables, and community guides, focused on managing various aspects of EDS, HSD, and related conditions. 
• Design engaging content for The Ehlers-Danlos Society App, aimed at enhancing the lives of people with EDS and HSD. 
• Provide concise and accessible summaries of research articles to disseminate research updates to the EDS and HSD community. 
• Work in partnership with internal and external stakeholders to publish content relevant to the community and healthcare professionals. 
• Review and update educational materials to ensure they reflect the latest understanding of EDS, HSD, and related conditions. 
• Support other departments by reviewing their content to ensure it meets our information standards. 

Video Content and Graphics 

• Work with the events and communications teams to create and maintain a comprehensive audit of video and graphic content. 
• Identify and integrate relevant video and graphic content into our educational resources. 
• Propose ideas for graphics and video content, including social media graphics, educational infographics, short video content, and long video content. 

Kids and Teens Content 

• Develop a strategic approach for educating kids and teens about EDS, HSD, and related conditions. 
• Create educational materials specifically tailored for kids and teens to learn about EDS, HSD, and related conditions. 
• Assist other departments with planning and executing programs for kids and teens. 

Awareness Efforts 

• Develop resources designed to help individuals raise awareness about EDS and HSD. 
• Plan and execute an awareness campaign for EDS & HSD Awareness Month in May. 
• Continuously propose and implement ideas to enhance global understanding and awareness of EDS and HSD. 
• Engage with external stakeholders to improve awareness of EDS and HSD. 

Work Environment

Under normal conditions, this role is a fully remote position, working from home. However, due to the international nature of the Society’s work, staff may be required to travel to company events, meetings, and conferences as well as some weekend work.   

Requirements

• Bachelor’s degree in biological sciences or a related scientific field 
• Strong scientific and/or medical background with the ability to communicate scientific information with a lay audience 
• Excellent written communication skills and proven demonstrated experience with science communication 
• Knowledge of EDS and HSD and dedication to continue learning  
• Excellent organization and time management skills and the ability to prioritize workload. 
• Knowledge of GDPR and HIPAA regulations is preferred, and training will be provided.  
• Must be eligible to work in the US/UK without sponsorship.  
• Must be able to work with colleagues and stakeholders across different time zones globally, which may occasionally include early morning or late evening meetings. 
• Proficient in using Microsoft Office applications (Outlook, Word, Excel, PowerPoint) as well as Monday.com, Zoho Voice, Zoom & Teams.  
• The ability to work in a virtual team setting and work independently.  
• Ability to occasionally work evenings and weekends.  
• Stable internet connection required for video calls & cloud-based services as this is a fully remote role.  
• Travel to and attend our two in-person staff retreats per year (1 UK & 1 US based).  
• Travel to and attend our in-person annual Global Learning Conference, and other events as required from time to time.  

Diversity Statement

The Ehlers-Danlos Society’s commitment to diversity and inclusion is driven by the four pillars of our mission: C.A.R.E. – providing care, access, research and education in all that we do. We are a global, multicultural organization, as such we seek to increase opportunities for individuals from diversified backgrounds and are committed to building an inclusive culture that celebrates the diverse voices in our team and community. The Ehlers-Danlos Society actively recruits, employs, trains, compensates, and promotes opportunities regardless of race, nationality, ethnicity, gender, marital or civil partner status, caring responsibilities, disability, gender identity, age, social class, sexual orientation, religion, and other protected status as required by applicable law.  

Reports to: Community Education & Support Director 
Location: US / UK, Remote Based 
Working Hours: Full-Time, 9am-5pm (EST/BST) 
Salary: $34,000 / £26,000 per annum (depending on location) 
Revised: June 2024 

Organization Overview  

The Ehlers-Danlos Society’s mission is dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We support the development of effective and equitable EDS and HSD therapies and work collaboratively to improve the lives of individuals affected by EDS and HSD.  

Our vision is to create a world in which each person living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders has the right treatment and care at the right time for their specific needs.  

Overview of Responsibilities  

The Ehlers-Danlos Society is seeking a dynamic and passionate individual to join our team as Educational Outreach Coordinator. This role is pivotal in advancing our mission to improve the lives of those affected by Ehlers-Danlos syndromes (EDS) and related disorders (HSD). As the Educational Outreach Coordinator, you will serve as a key ambassador for the Society, fostering connections with healthcare providers, community advocates, and individuals affected by EDS & HSD.   

We are looking for a friendly, professional, and enthusiastic individual who can deliver an extremely high level of engagement to our stakeholders and colleagues. If you are passionate about raising awareness of EDS & HSD and making a difference in the lives of those affected by rare diseases, we encourage you to apply for this rewarding opportunity. 

Key Responsibilities/Essential Functions  

This role has three (3) core areas of ownership. The responsibilities involved include, but are not limited to:  

Healthcare Professionals Engagement, Outreach, and Management 

• Manage the Healthcare Professionals Directory on our website, including all current and incoming listings, and handle email correspondence about the directory. 
• Outreach to prospective providers to expand our directory, fostering growth and ensuring a diverse and comprehensive resource for individuals seeking care.  
• Build and maintain strong relationships with healthcare professionals and clinics to promote education and support for individuals affected by EDS & HSD. 
• Coordinate with the Events team to promote upcoming events to healthcare professionals, their networks, and practices, encouraging them to participate as speakers, panelists, sponsors, and attendees at Society events.  
• Collaborate with the EDS ECHO team to develop methods to engage healthcare professionals in EDS ECHO programs, providing information on how the programs can enhance their practice and care for the community. Assist in promoting EDS ECHO programs to the relevant audiences. 

Global Affiliate Outreach, Engagement, and Management 

• Manage the Support Group and Charity Directory on our website, including all current and incoming listings, and handle email correspondence about the directory.  
• Manage the Global Affiliation Program with a proactive approach to expand outreach, programming, and collaborative efforts with regional and local support groups, charities, and societies. This includes hosting the quarterly affiliates meeting, moderating the Affiliate Slack Community, reviewing the monthly affiliates newsletter, and handling correspondence with affiliates.  
• Build and maintain strong relationships with external stakeholders, including patient advocacy groups and community networks, to promote education and support for individuals affected by EDS & HSD. 

Community Outreach and Engagement 

• Assist our Communications team to provide social media community management across Society social media platforms. 
• Assist with moderating our community message board forum on Inspire, including collaborating with our Inspire team partners to increase community engagement and interaction.  
• Host Let’s Chat: Virtual Support Groups, providing a supportive and inclusive space for individuals affected by EDS & HSD, which may require work outside of normal business hours. 
• Support the marketing director in utilizing social media, newsletters, and other communication channels to showcase success stories and testimonials from healthcare professionals and community members, inspiring others to join and participate in our programs and initiatives. 
• Represent the Ehlers-Danlos Society at events, health fairs, and conferences, building relationships and networking with stakeholders from around the world, to advance our mission of improving the lives of those affected by EDS & HSD. 

• Measure outcomes and analyze data to assess the effectiveness of outreach efforts, and make recommendations for improvement, continuously striving for excellence in our outreach and engagement initiatives. 

Work Environment   

Under normal conditions, this role is a fully remote position, working from home. However, due to the international nature of the Society’s work, staff may be required to travel to company events, meetings, and conferences as well as some weekend work.    

Requirements  

• Bachelor’s degree in psychology, sociology, public health, communications, marketing, or related field. 
• Knowledge and understanding of EDS, HSD, and related conditions preferred. 
• Experience in community outreach, healthcare education, or patient advocacy preferred. 
• Excellent communication and interpersonal skills, with the ability to engage diverse audiences. 
• Strong organizational skills and attention to detail. 
• Ability to work independently and collaboratively in a fast-paced environment. 
• Passion for making a positive impact in the lives of individuals affected by EDS & HSD. 
• Knowledge of GDPR and HIPAA regulations is preferred, and training will be provided.  
• Must be eligible to work in the US/UK without sponsorship.  
• Must be able to work with colleagues and stakeholders across different time zones globally, which may occasionally include early morning or late evening meetings. 
• Proficient in using Microsoft Office applications (Outlook, Word, Excel, PowerPoint) as well as CMS, Monday.com, Zoho Voice, Zoom & Teams.  
• The ability to work in a virtual team setting and work independently.  
• Ability to occasionally work evenings and weekends.  
• Stable internet connection required for video calls & cloud-based services as this is a fully remote role.  
• Travel to and attend our two in-person staff retreats per year (1 UK & 1 US based).  
• Travel to and attend our in-person annual Global Learning Conference, and other events as required from time to time.  

Diversity Statement    

The Ehlers-Danlos Society’s commitment to diversity and inclusion is driven by the four pillars of our mission: C.A.R.E. – providing care, access, research and education in all that we do. We are a global, multicultural organization, as such we seek to increase opportunities for individuals from diversified backgrounds and are committed to building an inclusive culture that celebrates the diverse voices in our team and community. The Ehlers-Danlos Society actively recruits, employs, trains, compensates, and promotes opportunities regardless of race, nationality, ethnicity, gender, marital or civil partner status, caring responsibilities, disability, gender identity, age, social class, sexual orientation, religion, and other protected status as required by applicable law.  

Reports to: Education and Events Director
Location: Remote (United Kingdom or North America, Eastern Time Zone)
Working Hours: Full-Time, 9am-5pm (EST/BST) 
Salary: up to £28,000 per annum UK /up to $36,000 per annum US
Revised: July 2024

Organization Overview  

The Ehlers-Danlos Society’s mission is dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We support the development of effective and equitable EDS and HSD therapies and work collaboratively to improve the lives of individuals affected by EDS and HSD.  

Our vision is to create a world in which each person living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders has the right treatment and care at the right time for their specific needs.  

Overview of Responsibilities  

The Events Coordinator is an integral part of the Events Team in organizing several global meetings, conferences, and events throughout the year for internal and external stakeholders. This includes evaluating and negotiating with vendors, whilst collaborating with the Education and Events Director, Events Coordinator, and Finance Director in drafting contracts, managing budgets, and coordinating communications with attendees, speakers and additional stakeholders from various backgrounds. 

The Events Coordinator must be comfortable working in a fast-paced environment that demands a creative, business-driven mindset and encourages fostering lasting relationships with stakeholders, whilst being a well-organized natural problem solver with excellent communication skills and attention to detail. 

Key Responsibilities/Essential Functions  

This role has four (4) core areas of ownership, the responsibilities involved include, but are not limited to: 

Events & Meeting Management 

• Support and maintain the vision, mission, priorities, and guiding principles of The Ehlers-Danlos Society. 
• Support the coordination of the planning and execution of all gatherings including, but not limited to meetings, retreats, educational conferences, site visits, working group meetings, virtual & hybrid events, and webinars. 
• Research vendors and make selections based on their accessibility, quality, and cost. 
• Book venues, schedule guests, draft and finalize contracts, and lock down day-of logistics. 
• Comply with all national and local regulations.
• Attend and supervise in-person events that occur globally throughout the year.  
• Support the application and compliance for CME (continued medical and education certification) pertaining to the events.  
• Contribute to content creation and agenda building for events and meetings.  
• Coordinate speaker and entertainment invitations and logistics.

Stakeholder Support & Liaison 

• Serve as a liaison for event speakers, providing them with vital logistical information in advance of the event and processing reimbursements after the events.  
• Support the Development team in efforts towards relationship building, donor engagement, and fundraising activities for event sponsorships. 
• Field internal/external questions regarding locations, attendance, cost, sponsorships, etc. 
• Assist the Communications team to promote events and recruit new attendees. 
• Develop and maintain positive relationships with internal departments and key stakeholders.   
• Schedule and execute virtual pre-recordings with speakers. 

Event Department Administration 

• Understand the strategic direction and purpose of the organization and support the fundraising strategies and business needs.  
• Handle day-to-day administration of events and meetings, including order placements, BEO reviews, vendor monitoring, travel planning, restaurant reservations, attendee participation, registration counts, RSVP tracking, and issues resolution. 
• Oversee administrative functions including tracking/coordinating event reservations, invoicing, and seating/table assignments.  
• Support the Events Director with managing the recording of financial accounting pertaining to events.  
• Create and execute surveys to measure improvement of services.  
• Assist with analyzing data to measure improvement of services.  
• Other related duties and responsibilities as assigned by the Events Director. 

Audio Visual Logistics & Operations 

• Review and coordinate captioning services for event recordings. 
• Coordinate with editors for video editing tasks. 
• Maintain a log of video edits made during events. 
• Serve as the liaise with audiovisual (AV) support teams. 
• Assist with set design preparations. 
• Coordinate language translations for event materials. 
• Research AV vendors and equipment for meetings and events. 
• Assist the Website team with building and uploading event webpages. 
• Support the creation and management of registration forms, including handling refunds and coupon codes. 
• Support the management of the shared events mailbox and respond to inquiries promptly. 
• Provide telephone support for the events line during working hours. 
• Assist the Communications team to promote events and recruit new attendees. 
• Develop and maintain positive relationships with internal departments and key stakeholders. 

Work Environment   

Under normal conditions, this role is a fully remote position, working from home. However, due to the international nature of the Society’s work, staff may require regular travel to company events, meetings, and conferences as well as some evening and weekend work.   

Requirements  

• Proven experience and working knowledge of coordinating events is required. 
• Bachelor’s degree preferred (hospitality management, public relations, healthcare or similar relevant field is preferred) although an equivalent amount of education and experience will be considered.  
• Experience executing face-to-face events and virtual events and programs.  
• Experience managing Zoom webinars and Zoom meetings as well as other virtual platforms, and a willingness and ability to explore new virtual platforms and master their use.  
• Familiarity with AV equipment and technical setups preferred. 

• Knowledge of CMS Software and WordPress is advantageous. 

• Ability to work in a fast-paced environment and be forward-looking, creative, proactive, and efficient.  

• Highly organized with an ability to manage the details of multiple projects and the necessary time management skills to consistently meet deadlines.  
• Excellent project management and time management skills with the ability to work collaboratively across departments to deliver on strict deadlines. 
• Versatility to be both a self-starter who takes initiative and a collaborative team player with strong interpersonal skills focused on achieving results.  
• Strong communication and interpersonal skills; demonstrated ability to deliver exceptional customer service.  
• Ability to maintain databases of personal information and educational materials.   
• Must be eligible to work in the US/UK without sponsorship. 
• Must be able to work with colleagues and stakeholders across different time zones globally, which may occasionally include early morning or late evening meetings. 
• Knowledge of GDPR and HIPAA regulations is preferred, and training will be provided.  
• Proficient in using Microsoft Office applications (Outlook, Word, Excel, PowerPoint) as well as Monday.com, ZohoVoice, Zoom & Teams. 
• The ability to work in a virtual team setting and work independently.  
• Ability to occasionally work evenings and weekends. 
• Stable internet connection required for video calls & cloud-based services as this is a fully remote role. 
• Travel to and attend our two in-person staff retreats (1 UK & 1 US based per year).  
• Travel to and attend our in-person annual Global Learning Conference and other events as required.  

Diversity Statement    

The Ehlers-Danlos Society’s commitment to diversity and inclusion is driven by the four pillars of our mission: C.A.R.E. – providing care, access, research and education in all that we do. We are a global, multicultural organization, as such we seek to increase opportunities for individuals from diversified backgrounds and are committed to building an inclusive culture that celebrates the diverse voices in our team and community. The Ehlers-Danlos Society actively recruits, employs, trains, compensates, and promotes opportunities regardless of race, nationality, ethnicity, gender, marital or civil partner status, caring responsibilities, disability, gender identity, age, social class, sexual orientation, religion, and other protected status as required by applicable law.