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 our 2021 campaign, why we need awareness, and how to get involved!

Making a difference, together.

Many around the world face a diagnostic odyssey: years, sometimes lifetimes, fighting for recognition, diagnosis, and care. The average time to a diagnosis of an Ehlers-Danlos syndrome or hypermobility spectrum disorder is 10-12 years.

For some, it can take decades. 

Once individuals have a diagnosis, the journey and care must not end there. Guidance, treatment, and support are urgently needed and deserved to improve quality of life. 

Help raise vital awareness, globally, by completing a challenge (or as many as you can) during the month of May.

Every kilometer (KM) walked or rolled, every $ raised, every act of awareness helps us towards our goal of 120,000 global acts of awareness! Our globe tracker will show the total Acts of Awareness as we work towards our goal together. 

Earn Society incentives with the Acts of Awareness Challenges!

Every kilometer (KM) walked or rolled, every $ raised, and every social media post counts as 1 act of awareness.

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 = Society Merchandise $20 evoucher for RedBubble Store

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

The Acts of Awareness Challenge

Walk 'n' Roll Challenge

Social Media Challenge


Proclamation Challenge

#MyEDSChallenge  #MyHSDChallenge

Awareness Resources + Printables

I joined the Acts of Awareness Challenge

Awareness Materials

AWareness Templates


We Need Awareness

We need pathways for treatment and care.

We need education of healthcare professionals

May Awareness Month Merchandise – Now available to order!

May awareness white tshirt

May Awareness Black Tshirt

Enter, Support and Win!

Purchase your chance to win an Ehlers-Danlos Society swag bag or a GoPro HERO9.

For a chance at the weekly swag bag give-away, purchase a $20 ticket. You may purchase as many as you would like. There will be two (2) Swag Bag give-aways. The first winner will be selected on May 19, 2021, and the second winner on June 1, 2021. The more tickets you purchase, the better the chances of your winning this great swag! Included this prize: Ehlers-Danlos bag, t-shirt (size can be chosen), magnet, key chain, phone pop socket, and a hat.

For a chance at the GoPro HERO9 give-away, purchase a $50 ticket. You may purchase as many as you would like. There will be one (1) GoPro give-away. The winner will be selected on June 1, 2021. The more tickets you purchase, the better the chances of your winning this amazing GoPro valued at over $350!

*Those who purchase an entry will automatically have their name entered and we will automatically generate those names with a winner being selected. We will use the site Random Name Picker for entries.