Raise Awareness!

Complete as many Acts of Awareness as possible this May and help the global effort for Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). From telling your healthcare team about the award-winning educational program EDS ECHO, sharing brochures in your doctor’s office, or changing your profile picture on social media, there is something for everyone to get involved in. Together we dazzle! Read on for how to get involved.

Help with one act of awareness by telling your healthcare team about the award-winning education program, EDS ECHO. If you are a health professional, please join and tell your colleagues!

EDS ECHO is tackling several key issues facing patients with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorder (HSD): supporting clinicians in increasing their knowledge; helping clinicians network with each other to discuss care, increasing access to care by increasing the number of experienced clinicians, and supporting community advocates in raising awareness of EDS and HSD.

Too many in our community report that they are forced to travel far and wide and to wait very long periods to access doctors and allied health professionals who know how to manage the healthcare needs of people with EDS and HSD.

EDS ECHO covers all types of EDS, HSD, and associated symptoms and conditions, providing clinical case presentations, the latest management advice, and evidential research. Please help us by telling your healthcare team or healthcare colleagues about EDS ECHO and inviting them to join this growing community that will change lives. Learn more here and download the flyer here.

EDS ECHO Clínico en Español este es un programa gratuito para profesionales de la salud hispanohablantes de todo el mundo, en todas las disciplinas, que quieran mejorar sus habilidades para atender los síntomas y condiciones asociadas de personas con Síndrome de Ehlers Danlos (SED) y Trastornos del Espectro Hipermóvil (TEH).

Raise awareness with printable brochures, leaflets, and posters! Find resources to print on the Ehlers-Danlos syndromes (EDS) (click here for black and white version), vascular Ehlers-Danlos syndrome (vEDS), hypermobility spectrum disorders (HSD)(black and white version), 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. 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 so we now use Twibbonize.

  1. Simply select a frame from the 3 choices here, and you will be taken to Twibbonize. Simply tap 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 and HSD types
  • Walk & Roll Challenge
  • Proclamation Challenge
  • May countdowns
  • Social Media Challenge day numbers

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” or “EDSSociety1” 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” or “EDSSociety1” in the search box (which should bring up all of the designs)⁠
5. Add to your story and tap share!⁠

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 17, 2024, 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.

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

Wednesday, May 1, 2024, 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. 

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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