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.

Take them to your doctor’s office or hand them out at school, work, or an event!

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.

1. Simply select a frame from the 3 choices here, and you will be taken to Twibbonize. Simply tab along to choose from EDS, EDS and HSD, or HSD frames.
2. Click “Choose Photo” – From there you can upload your photo from your camera roll on your smartphone or a folder on your desktop.
3. Click “Download” 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!

Get ready for Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Awareness Month this May and share what you’ll be doing in your Facebook stories with our all-new stickers!

There are over 80 designs to choose from including:

Zebra Strong
Together We Dazzle
EDS types
Walk & Roll Challenge
Proclamation Challenge
May countdowns!

How do I use the stickers?

Facebook

1. Simply click the + sign as usual to start your Facebook post
2. Select “story”
3. Select your photo from your camera roll you want to share or text, selfie, etc from the options available
4. Tap on the smiley sticker icon
5. Tap the box that says ‘GIF’
6. Search your terms or “Ehlers-Danlos” in the search box (which should bring up all of the designs)
7. Add to your story and tap share!

You can also find all of the GIFs here. You can copy the link into a comment on Facebook to share too!

Instagram

Simply click ‘Share story’ on Instagram⁠
2. Tap on the smiley sticker icon⁠
3. Tap the box that says ‘GIF’⁠
4. Search your terms or “Ehlers-Danlos” in the search box (which should bring up all of the designs)⁠
5. Add to your story and tap share!⁠

New for 2023, Facebook and Instagram story frames! There are over 3 designs to choose from – here’s how to use them this May:

Instagram:

1. Choose which frame you want to use from the below image. Hold the image below and download it to your smartphone. It should go into your camera roll or gallery.
2. Go to your Instagram profile. Click the + sign in the top right-hand corner to start your post as usual – select ‘story’ from the options listed.
3. Your smartphone’s gallery or camera roll will open. Select a photo that you want to share first and tap on it. Make it full screen in your story for the best frame experience.
4. Click on the smiley-face sticker icon.
5. Select the + button from the options to reopen your smartphone gallery or camera roll.
6. Select the story frame from your gallery and it will be added to your story.
7. Arrange as you like and click to add to your stories!
8. Click on the upload button to add your frame and post.

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

Wednesday, May 3, 2023, is Wear It Wednesday – Zebra Strong!

For Wear It Wednesday, wear something zebra striped and share how you are Zebra Strong! The zebra is our symbol and we are Zebra Strong. No two zebras have identical stripes just as no two people with a type of EDS or HSD are identical. We have different symptoms, different types, and different experiences—and we are all working towards a time when a medical professional immediately recognizes someone with these conditions, reducing the time to diagnosis, and improving pathways to care.⁠

⁠Living with an EDS or HSD is not easy. Being zebra strong is facing challenges with EDS or HSD, facing struggles and difficulties daily. Being zebra strong is making adaptions to continue doing things you love, or adapting to no longer being able to do things you may have once done. Being Zebra Strong is finding strength in the face of adversity, or just weathering the storm.

Join in the Social Media Challenge this May. 

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.