Raise Awareness!

Raise awareness with printable brochures, leaflets, and posters! Find resources to print on the Ehlers-Danlos syndromes (EDS), vascular Ehlers-Danlos syndrome (vEDS), hypermobility spectrum disorders (HSD), The Ehlers-Danlos Society, and EDS ECHO, a program for health professionals to learn how to better support and care for their patients with these conditions, here.

Add a Social Media Frame to your profile picture this May to raise awareness and encourage your friends and family to learn more about EDS and HSD! We have 3 May designs to choose from.

How do I add my frame?

We use Twibbonize as a platform to create your frame. It’s free to use (you do not need to pay to add a frame!) but the platform does have advertising – simply remove the pop-up adverts and scroll down to add your frame! Facebook Frame studio unfortunately removed access to organizations in 2021 and we know how much the community loves to support The Ehlers-Danlos Society through frames and so we now use Twibbonize.

Simply select a frame from the 3 choices here, and you will be taken to Twibbonize. From there you can upload your photo from your camera roll on your smartphone or a folder on your desktop, and then download the framed picture for your social media channels. It should go into your camera roll or whichever folder you have saved it to, ready for you to upload as your new profile picture!

Why do we use the zebra in our logo, and why is our dazzling community #ZebraStrong? ⁠Learn more!

Vascular Ehlers-Danlos syndrome (vEDS) is a genetic connective tissue disorder that causes the blood vessels and organs to be fragile and prone to tearing. The complications of vEDS can be life-threatening and include aneurysm, dissection, and rupture of the arteries and rupture of organs. vEDS may also cause a variety of other symptoms, including extensive bruising and spontaneous pneumothorax.

This awareness video hopes to highlight some of the experiences of the community living with vEDS, the impact on their families, the importance of education and research, and hopes for the future. There is no better way of hearing what it is like to live with vEDS, than from individuals who have vEDS themselves. Please share this and raise awareness of vEDS.

Friday, May 19, 2023, is global #REDS4VEDS Day! A day dedicated to raising awareness of vEDS and showing support for people living with this condition. To take part, simply wear red, take a selfie, and post it on social media using the hashtag #REDS4VEDS.

Printable brochures about how we support people and families living with vEDS can be found here.

Use these easy templates to ask friends and family to support your #myEDSchallenge | #myHSDchallenge and to help you reach your awareness goals! 

Just copy/paste the text here into your email or to social media, and then fill in the blanks with information about your challenge and your story.  

#myEDSchallenge  #myHSDchallenge

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