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.
This May, take one simple but powerful step to improve awareness, reduce diagnosis time, and enhance care for those with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). Help us spread the word about EDS ECHO—an award-winning education program that is transforming medical knowledge and patient care worldwide.
💡 What is EDS ECHO?
At EDS ECHO we are supporting doctors, nurses, therapists, midwives, pharmacists, health and social administrators, and community leaders and educators, worldwide, to be better informed and confident in their diagnosis and management of EDS and HSD, and to provide care locally.
🏥 Why Does This Matter?
Right now, too many people with EDS and HSD struggle to find doctors who understand their condition. People face long wait times, referrals across cities or even countries, and significant barriers to care. By expanding access to trained professionals, EDS ECHO is helping to bridge this gap.
🤝 How You Can Help
Together, we can ensure more clinicians understand EDS and HSD, reducing time to diagnosis and improving care for people around the world.
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.
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:
How do I use the stickers?
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!
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 heritable connective tissue disorder that makes the connective tissue very fragile, particularly in the blood vessels and hollow organs. vEDS can cause life-threatening complications, such as aneurysm, dissection, and rupture of the arteries and rupture of organs, mainly the bowel.
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 16, 2025, 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.
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.
