Category: Society News

Rare Disease Day. Rare is Many, Rare is strong, Rare is proud.

The Ehlers-Danlos Society celebrates Rare Disease Day, 2021 

February 28 is Rare Disease Day, but what is a rare disease?  In Europe, a rare disease is defined as when it affects fewer than one in 2,000 people. In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people.  There are over 300 million people living with one or more
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January 31 is International Day of the Zebra!

Day of the zebra On Sunday, January 31st, the world recognizes International Day of the Zebra. On this day, we celebrate our own zebra dazzle: individuals living with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). Education and awareness Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect
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AHEAD - Action for Infants, Children and Young People with HSD and EDS Accurate Diagnosis.

Pediatric Concerns in EDS and HSD: Exploring the impact of misdiagnosis

On January 10, 2021, The Ehlers-Danlos Society hosted an awareness event exploring misdiagnosis of hypermobility spectrum disorders [HSD] and Ehlers-Danlos syndromes [EDS] and child abuse. The Ehlers-Danlos Society has been hearing from a growing number of families and individuals sharing their experiences of being diagnosed with a factitious disorder, either imposing ill health on self
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2020 Research Grants. Clinical research takes place in the left hand corner. Hands come together in the bottom left corner, and a microscope sits in a laboratory.

Applications Now Open: Basic Research Grants & Microgrants

The Ehlers-Danlos Society is now welcoming applications for its second microgrant round and Basic Research Major Grants. Microgrants In early 2020 the applications opened for the Spring Microgrants program 2020. The Society was able to award a number of $5,000 microgrants to assist researchers undertaking research, surveys, and data analysis in the areas of Ehlers-Danlos
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A community member accesses a virtual conference on their tablet

2021 Events Scholarships Announced!

November is World Scholarships Month and the perfect time to announce our 2021 Event Scholarships!   Thanks to the generosity of donors, The Ehlers-Danlos Society will be providing a number of scholarships in 2021. Scholarship applicants can apply for either the Virtual Summer Conference 2021 or for the series of five individual one-day meetings, part
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Connecting our dazzle in 2021

New Virtual Events Announced!

We cherish the opportunities our in-person events give us: meeting so many of you and enabling people living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders a chance to connect with others sharing similar experiences, yet this year has shown us how much we can accomplish virtually – and how many more people impacted by these conditions
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EDS ECHO Summit

The Ehlers-Danlos Society to host its first virtual EDS ECHO Summit 

The Ehlers-Danlos Society is delighted to be hosting its first-ever virtual EDS ECHO Summit: A Virtual Scientific Meeting on EDS, HSD, and Comorbidities on October 2-3, 2020. The EDS ECHO Summit was created to run in between our in-person International Symposiums that take place every three years. It is important to us to ensure a
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