May is EDS and HSD Awareness Month!

May is EDS and HSD Awareness Month

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What is EDS and HSD Awareness Month?

Every May, people all over the world show their support for people living with and affected by the Ehlers-Danlos syndromes (EDS), and hypermobility spectrum disorders (HSD). Our shared mission is important throughout the year, but May is a time we all come together, share experiences, and highlight what is needed to progress change. 

For months now, the challenges of the COVID-19 pandemic have made the situation even more difficult for those living with EDS and HSD with delayed or canceled appointments, treatments, genetic testing, and diagnosis, to accessing care and therapies they depend on for quality of life.

Now more than ever, we need the global EDS and HSD community, health care professionals, businesses, policy-makers, and individuals across the world to help us push forward with research and education to improve care.

Read on to learn more about why we need awareness.

May Awareness Month 2021 Update

The Ehlers-Danlos Society extends the biggest THANK-YOU around the World to everyone in the community, family, friends, and fundraisers, for achieving an incredible 136,228.64 Acts of Awareness this May as part of the #MyEDSChallenge #MyHSDChallenge – surpassing the goal of 120,000!

More awareness means:⁠

  • A shorter time to diagnosis of an EDS or HSD – the average diagnostic journey is 12 years, for many others, a lifetime⁠
  • Increased funding for research⁣ for our future⁠
  • More support and understanding for those living with these conditions ⁣⁠
  • Knowledge of the comorbidities of EDS and HSD, how they can impact quality of life, and how they can be managed
  • Connecting the dots sooner for so many – less isolation for our community⁣, less time spent thinking they are alone, less time struggling⁠


We are delighted to offer the following incentives to those who take part and help spread awareness of EDS and HSD:

  • Complete 50 acts of awareness to receive a $20 eVoucher for Redbubble to spend as you wish on a range of fabulous merchandise!
  • Complete 100 acts of awareness and receive a Society pin and awesome collapsible Society water bottle.
  • Complete 200 acts of awareness to receive a pass to our Virtual Summer Conference, taking place June 26-27, 2021.

Please note: Incentive prizes do not accrue as you move to the next tier of incentives. In order to claim incentives from multiple tiers, you must complete acts of awareness equal to those tiers combined. In order to qualify to claim incentive prizes, you must submit my acts of awareness by June 7, 2021. Acts of awareness submitted after this date will not qualify for incentive prizes.

50 acts of awareness / $ / KM = $20 evoucher for Society Merchandise eVoucher (image of the t-shirt design for May)

100 acts of awareness / $ / KM = Water bottle + pin badge

200 acts of awareness / $ / KM = Pass for the Virtual Summer Conference: Managing Daily Life With EDS & HSD, June 26-27 2021

Why do we need awareness?

We need pathways for treatment and care.

We need education of healthcare professionals

The Acts of Awareness Challenges

Walk 'n' Roll Challenge

Social Media Challenge


Proclamation Challenge

Awareness Resources + Printables

I joined the Acts of Awareness Challenge

Awareness Materials

AWareness Templates


May Awareness Month Merchandise – Now available to order!

May awareness white tshirt

May Awareness Black Tshirt