The Ehlers-Danlos Society is offering several ways to get involved, spread awareness, and raise funds during Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorder Awareness Month in May.
Through a mix of individual and group challenges, plus tools and other resources, the society is challenging patients and advocates to join in helping to raise awareness for Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD), both connective tissue disorders.
Individuals who raise at least $40 over the course of the month using an official society fundraising page or through a society-reviewed effort will get a limited edition T-shirt. Money can be raised through activities such as a 5K fun run or a barbecue cook-off, for example. Awareness materials are available for event distribution.
There are also daily challenges geared toward raising awareness of EDS and HSD that participants can complete to earn a free T-shirt.
Participants are encouraged to use the hashtags #myEDSchallenge, and #myHSDchallenge on social media, and wear the T-shirt, society merchandise, or apparel emblazoned with a zebra image, which the organization uses as its logo. In medicine, zebras are often used as a reference to a rare disease or condition.
Digital presentations and printable EDS and HSD awareness brochures, posters, and signs are available here. A supporter logo is also available. A photo and video gallery of fundraising and awareness events — which may be useful for ideas — may be viewed here. Use this form or one of the above hashtags for submissions.
Supporters also can participate in a challenge to request an official proclamation of May as EDS/HSD Awareness Month raise from state, city, or other local governments. Visit here for a template and more information about this initiative.
More information about events and initiatives throughout EDS/HSD Awareness Month is available here.
A global community of advocates, patients, caregivers, and healthcare professionals, the EDS Society was established to improve the lives of those affected by the syndrome and related disorders.
EDS is a group of connective tissue disorders that can be inherited, and are varied in both their impact on the human body and their genetic causes. Overall, these disorders are characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.
The combined prevalence of all types of EDS is roughly 1 in 5,000 people globally, with the hypermobile and classical forms being the most common.