A letter to our community

Posted June 5, 2020

The Ehlers-Danlos Society for Equality

The Ehlers-Danlos Society stands with the community for equality. Systemic racism towards Black, Asian, and minority ethnic (BAME) communities and any discrimination towards any minority community is abhorrent.

The Ehlers-Danlos Society is committed to providing inclusive support and advice for everyone, worldwide, living with or affected by the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), and health professionals looking to provide care for their patients living with these conditions. 

Disparities in healthcare are very real. We do not accept inequality, and we continue to strive in our mission to give hope to and improve the lives of people affected by EDS and HSD. 

Breaking Down Barriers

In January 2020 we launched our Breaking Down Barriers campaign to highlight the challenges facing our community. We recognize our global community’s experiences of racial, gender, sexuality, age-related, mental health, disability-related, and economic inequalities. We use our platform to share these experiences and to highlight this narrative

We challenge disparities in healthcare, and we want to hear what barriers you are experiencing in diagnosis, recognition, treatment, and care. So many in our community spend years, sometimes lifetimes, looking for answers. This needs to change. 

Together, we will develop a Breaking Down Barriers Coalition: bringing together representation from our community that represents different races, countries, genders, sexualities, age groups, disabilities, types of EDS and HSD, and all those who feel that they do not have the care they need because of a barrier. We want to be led by the community on what we can do to progress change, to develop resources, programs, and research. The Coalition will address inequalities, and help inform Society programming and advocacy efforts. 

EDS ECHO

Through our EDS ECHO program, we are working for equal access and quality of care for all by educating health professionals, worldwide, to improve their ability to care for people with EDS, HSD, and associated symptoms and conditions. Geography, wealth, and disparities in healthcare, should not determine your quality of life. 

Research

Almost 10,000 members of our community have now joined the Global Registry for EDS, HSD, and related disorders. Through the registry data, we are collating information on, for example, time to diagnosis, complications, and comorbidities of EDS and HSD, access to care, and outcomes. We are exploring these in relation to age, gender, race, and country of residence looking for and highlighting commonality and disparity between groups in our community.  

Our upcoming Covid-19 survey will look at the impact the global pandemic has had on those living with EDS and HSD and will explore disparities in outcomes of Coronavirus, by looking at factors including age, gender, geography, and race, which will also help us to highlight how specific groups are affected. 

Support

Our virtual support meetings are a supportive, safe space to come together to discuss what matters to you, or just to listen. We speak with attendees every week from all around the world, and we invite you to join us at one of the many, weekly, monthly, and quarterly groups that take place. 

We always want to hear your ideas about what else we can do, how we can represent what is important to you, and how we can work together. Send your feedback and thoughts to askthesociety@ehlers-danlos.com and help us in our mission.

Please join us by sharing messages of inclusion and support. To apply to join our Breaking Down Barriers Coalition please click here. Our strength begins with hope, our hope begins with you.

The Ehlers-Danlos Society

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