Awareness Month Activities List

May is EDS Awareness Month

What can I do to help Ehlers-Danlos syndrome be recognized, receive good medical treatment and be understood?

Here is a list of suggested ideas. What will you do?

  • Educate your doctors by printing out a set of Medical Resource Guides for each of your medical professionals.
  • Connect with a run, a local health fair, a physical therapy or medical group and set up a booth or sponsor runners. Then let people know with pictures and articles for local news, the EDNF website, and Loose Connections.
  • Ask your doctors, the ones you like and respect, to join with EDNF and place themselves on the physician list for others EDSers to see. Have them email This e-mail address is being protected from spam bots, you need JavaScript enabled to view it .
  • Send EDNF educational materials to doctors, hospitals, family and friends to support EDNF and your fight with EDS.
  • Set up a table at a medical conference, hospital or physical therapy center in your area to educate others about EDS.
  • Make and wear an “Ask Me about EDS” nametag.
  • Contact local radio stations to play our public service announcements available from the EDNF website. Follow the link to download them.
  • Contact a restaurant to sponsor an event by giving a percentage to EDNF for the day’s receipts. Put up signs explaining EDS and provide information.
  • Set up a table at a supermarket or discount store to provide information.
  • Gift wrap at a Borders or other store willing to let you do this for tips to EDNF and give literature with each wrapping.
  • Contact your local newspapers and submit your story about EDS.
  • Do a fundraiser: a walk, a bake sale, a garage sale, a lemonade stand.
  • Participate in a FirstGiving e-mail campaign or set up your own.
  • Collect change for change. That is, put up a collection canister to collect change with a sign explaining EDS and requesting change for change.

You can make awareness meaningful and memorable with everyone you educate about EDS: you can change your life. You will change the lives of your children and grandchildren.