‘EDS and HSD: From Head to Toe’ conference scheduled for July

Five-day event in Philadelphia features tips, opportunities to connect

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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The Ehlers-Danlos Society will host a five-day conference in July, aiming to help people affected by Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD) learn useful tips for managing the conditions and connect with others in the EDS/HSD community.

The event, “EDS and HSD: From Head to Toe,” will take place July 17-21 in Philadelphia. Attendees will have access to a discounted rate at the Philadelphia Marriott Downtown. The conference can also be attended virtually.

The conference will feature discussions on a range of topics relevant to people living with EDS and HSD. Both are conditions that affect the connective tissue, resulting in symptoms like fragile skin and unusually mobile joints.

There will be discussions focused on everyday management strategies and how to prioritize symptoms and deal with pain, as well as talks on disease-specific care for individual body parts like the hands, neck, head, and pelvis. The last day of the conference will feature a discussion focused on rarer types of EDS.

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The conference also will feature discussions on topics including mental health, digestive and urogenital health, and how to establish a positive connection with healthcare providers. Attendees at the in-person event can register for brief one-on-one interviews with medical experts in EDS and HSD to ask informal questions.

There will be opportunities for yoga and other ways to get active, as well as chances to showcase the talent and uniqueness of the EDS/HSD community. These include an art competition called Zebras Got Talent, in which those with a creative streak can submit projects from paintings to music to poetry, an emporium where vendors can sell crafts, and Community Choice Awards to recognize people who are making a difference for people living with EDS and HSD.

Full adult admission to the conference is $550 for in-person attendance and $150 for virtual access. Discounted rates are available for students, children, and people attending as carers for other attendees. One-day tickets are also available.

The conference is sponsored in part by XRP Healthcare, which offers a savings card that aims to help reduce out-of-pocket costs for prescription medications.

“We are thrilled to support the EDS and HSD community through our sponsorship of this important charity event,” Kain Roomes, CEO and founder of XRP Healthcare, said in a company press release. “Our prescription savings card has the potential to save individuals with EDS or HSD hundreds of dollars annually, ensuring they can afford the medications they need to manage their condition effectively,” Roomes said.

Lara Bloom, president and CEO of the Ehlers-Danlos Society, said she was “deeply grateful to XRP Healthcare for their generous support” of the event.