2020 May Awareness – Acts of Awareness Challenge

acts of awareness

Join The Ehlers-Danlos Society to help spread EDS and HSD awareness, globally, by completing the Acts of Awareness Challenge (or as many as you can) during the month of May! Our goals are world-wide awareness—and a better quality of life for all who suffer from these conditions. By working together to raise awareness, we can give hope and progress change for our global community.

Be sure to share your acts of awareness with your social media networks and tag @ehlers.danlos on Instagram, The Ehlers-Danlos Society on Facebook, or @TheEDSociety on Twitter, for a chance to be reposted!

  1. Make it officially EDS and HSD Awareness Month in your state or region and request a proclamation! Take on the Proclamation Challenge.

2. Let others in the community know about your journey to diagnosis, your experience living with EDS or HSD, and the importance of raising awareness, and share your story. 

3. Tell your medical team, health professionals, and your networks about EDS ECHO!

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 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 of time 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. We offer educational virtual programs free to participants, and we are committed to continuing to do so. We are working hard for world-wide awareness—and a better quality of life for all who suffer from these conditions. 

4. Join the Global Registry and help researchers throughout the world to advance our understanding of EDS, HSD, and related symptoms and conditions! Each person who joins will help:

    • Map the experiences of those living with EDS, HSD and related disorders globally.
    • Enable the gene search for hypermobile EDS and hypermobility spectrum disorders.
    • Facilitate research into the frequency of related symptoms and conditions, which may be associated with the various types of EDS and HSD.
    • Discover new forms of EDS/HSD.
    • Understand the relationships between EDS/HSD and chronic pain, anxiety, and other problems such as neurological, mast cell, gastrointestinal, autonomic disorders. Join the Global Registry today.

5. Join in #REDS4VEDS Day on May 15, 2020! Wear something red, and post a picture on social media with the hashtag #REDS4VEDS to raise awareness of vascular Ehlers-Danlos syndrome (vEDS).

6. Join our ‘This is EDS / This is HSD’ campaign! Hold up a card, in any language that says “This is EDS” or “This is HSD” and take a photo. Submit your photo here to be included in our global awareness video.

To download your ‘This is EDS’ sign click here.

To download your ‘This is HSD’ sign click here.

7. Create a piece of art around EDS or HSD, take a photo or tell us about crafts you create, write a poem or share creative writing, or perhaps send in a dance, singing, or artistic video.

9. Spread awareness of our mission and share the Society’s website and awareness month materials.

Our goals are world-wide awareness—and a better quality of life for all who suffer from these conditions. Research is at the center of what we do, so that one day we will have a cure.

10. Help us raise awareness and tell the world about the issues that truly matter to our community! Ask five friends to join the CONNECT newsletter to keep up to date with the latest research, developments, and community stories on EDS and HSD.

#myEDSchallenge  #myHSDchallenge