The Ehlers-Danlos Society is committed to increasing care, access, research, and education for people with Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions globally.
Support groups and organizations around the world are working hard to further this mission. The EDS and HSD Global Alliance allows The Ehlers-Danlos Society to join forces with these organizations, fostering collaboration, awareness, support, and the spread of knowledge and research.
The EDS and HSD Global Alliance offers members an opportunity to meet and collaborate with other organizations, speak with representatives of The Ehlers-Danlos Society, and promote the work your organization is doing.
Is my organization eligible?
To join the EDS and HSD Global Alliance, your organization must be a registered charity or non-profit or hold regular support group meetings.
How do I apply?
The EDS and HSD Global Alliance’s application is embedded in our Support Group and Charity Directory. To apply, please fill out the form to list your organization and select that you would like to join the EDS and HSD Global Alliance. Please note, to be accepted into the program, you must accept the Alliance Agreement.
Why Should My Organization Join?
Collaborating with other organizations can provide access to new knowledge and tools, helping your organization improve the support you offer the community. The EDS and HSD Global Alliance establishes a strong network that encourages awareness, research, and change. There is always strength in numbers. The more people you have behind your mission, the louder your voice is and the greater impact you can have on the community. We look forward to working with your organization!
In addition to increasing support and awareness, collaboration can improve credibility. Joining the EDS and HSD Global Alliance helps you to build trust with your existing audience and establish a solid foundation for your organization’s mission. We invite both new and established organizations to join our Alliance!
By joining the EDS and HSD Global Alliance, you will also increase the visibility of your organization. The Ehlers-Danlos Society encourages cross-promotion of member organizations, inviting communities you might not have been able to reach previously to join your mission. We warmly invite our Alliance members to submit requests to share their initiatives on The Ehlers-Danlos Society’s social media channels and through newsletters.
Benefits of Joining the EDS and HSD Global Alliance
Members organizations receive:
Recognition
- Members receive a copy of The Ehlers-Danlos Society’s EDS and HSD Global Alliance logo, which they can use on their websites and social media.
- Members receive recognition on our website through a listing on our Support Group and Charity Directory, with a red badge signifying their Alliance status, to increase credibility and visibility to the community.
- Members have the opportunity to share initiatives their organization is working on.
Collaboration
- Members receive access to an EDS and HSD Global Alliance workspace on Slack where they can connect with other members of the program.
- Members receive a monthly EDS and HSD Global Alliance newsletter.
- Members are invited to quarterly Global Alliance Meetings with members of The Ehlers-Danlos Society to network and collaborate with other member organizations around the world.
Appreciation
- Members receive a 20% discount on registration for up to two (2) organization representatives at Ehlers-Danlos Society conferences and events.
- Members receive a 25% discount on merchandise at conferences for up to two (2) organization representatives.
Members of the EDS and HSD Global Alliance must abide by the following agreement. These guidelines have been established to promote a culture of collaboration, integrity, and accountability within the Alliance.
By applying to join EDS and HSD Global Alliance, the parties agree to:
- Collaborate with other organizations to increase care, access, research, and education for people with the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and related conditions.
- Work to advance worldwide awareness of the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and related conditions.
- Share knowledge, expertise, and competencies with other Alliance members.
- Adhere to the most up-to-date, internationally agreed-upon classification and diagnostic criteria of the Ehlers-Danlos syndromes and management and care guidelines published by the International Consortium on Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders.
- Work to resolve any conflicts or disputes that may arise within the Alliance through open and respectful dialogue, mediation, or other appropriate means, with the goal of maintaining positive relationships and advancing the mission of the Alliance.
- Respect the confidentiality of sensitive information shared within the Alliance by both The Ehlers-Danlos Society and/or other Alliance members and refrain from sharing such information outside of the Alliance without explicit consent.
Members must:
- Nominate up to two contacts to maintain communication and coordinate efforts with The Ehlers-Danlos Society.
- Keep their group’s Support Group and Charity Directory listing accurate and up to date.
- Complete an annual survey to retain membership.
- Comply with The Ehlers-Danlos Society’s guidelines for the use of the EDS and HSD Global Alliance logo and/or other logos or artwork provided to members by The Ehlers-Danlos Society.
- Have their own independent name. Members are not entitled to use The Ehlers-Danlos Society’s name, branding, or trademark logo.
- The Ehlers-Danlos Society is unable to provide financial assistance in the creation, development, or activities of those who become members of The EDS and HSD Global Alliance.
- Members of the Alliance have no legal connection or association to The Ehlers-Danlos Society. The Ehlers-Danlos Society holds no legal responsibility for work carried out by members of the EDS and HSD Global Alliance. Members of the EDS and HSD Global Alliance are not umbrella organizations of The Ehlers-Danlos Society.
- Members are not permitted to use The Ehlers-Danlos Society’s contact or EIN tax code information. The Ehlers-Danlos Society does not have any ownership or direct financial interest in members of the EDS and HSD Global Alliance.
- Work published by members of the EDS and HSD Global Alliance is not automatically endorsed by The Ehlers-Danlos Society.
- The Ehlers-Danlos Society does not guarantee or make any warranties, express or implied, as to the quality of advice or support given by members of the EDS and HSD Global Alliance.
- The Ehlers-Danlos Society reserves the right to remove members from The EDS and HSD Global Alliance at our discretion.
