Nonprofit’s 2026 EDS Awareness Month goal: Net $100K for research, care
Ehlers-Danlos Society launches fundraising campaign for 10th anniversary year
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May is EDS Awareness Month, an annual event in which advocates around the world work to increase awareness of Ehlers-Danlos syndrome (EDS) and other hypermobility spectrum disorders, and fundraise on behalf of those living with these genetic conditions.
For this year’s awareness month, the Ehlers-Danlos Society — a global advocacy group established a decade ago — has set its sights on an ambitious goal: to raise $100,000 that will help fund research and improved care for people with EDS.
“In 2026, we mark ten years of making a significant difference in the world, thanks to people like you,” the society states on its website. “From lighting up landmarks to sharing your stories, walking and rolling in your communities, and raising critical dollars for research and treatment, you’ve made what’s possible a reality.”
This year, the nonprofit is calling on supporters to take action.
“We invite you to join us in May to raise awareness and funds for a future in which diagnosis happens sooner, care is coordinated, and everyone is believed,” the website states. “Together, we’ve changed lives. Let’s keep going.”
Toward its goal, the Ehlers-Danlos Society is holding an online fundraiser and encouraging community members to host their own fundraisers, as well as selling merchandise. The website offers stickers, mugs, T-shirts, and hoodies.
The society’s Walk and Roll Challenge will also help raise funds.
Advocacy groups to hold initiatives to raise awareness of EDS
Beyond fundraising, the society has also launched several initiatives aimed at raising awareness, such as the Light It Up Challenge, in which local monuments are lit in orange for EDS awareness, and the Social Media Challenge, where advocates can spread the word online. The community is encouraged to use #MyEDSChallenge and #MyHSDChallenge to amplify their voice.
There’s also the Knowledge Challenge, which provides resources to help community members learn more about EDS each day over the course of May.
EDS and hypermobility spectrum disorders advocates in the U.S. and Canada are also encouraged to contact their elected leaders to ask about making a proclamation to honor the month.
Across the pond in the U.K., the advocacy group EDS UK is honoring awareness month by launching EDS UK Voices, an initiative that aims to amplify the experiences of people with EDS. The U.K. group is also hosting its annual Dazzle Walk, where advocates raise awareness by walking in sparkly zebra-themed clothing. The zebra is the symbol for rare diseases like EDS.
“Dazzle Walk is an inclusive event. Whether you’d like to walk it, wheel it or use other aids, you can take part in a way that works for you, at any time during May!,” the organization states. More information about these initiatives can be found on the group’s website.
On Friday, May 15, advocacy group Annabelle’s Challenge, based in the U.K, is hosting its annual REDS4VEDS campaign. It aims to raise awareness about vascular EDS, a severe subtype marked by abnormally fragile blood vessels. People around the world are encouraged to participate in the campaign by sharing a picture of themselves wearing red on social media, with the hashtag #REDS4VEDS.
