Ehlers-Danlos Awareness Month 2018

EDS Means We’re Fragile but Unbreakable

Spring is a time of renewal and renewed hope.  Join us in raising awareness about the Ehlers-Danlos syndromes—and the related disorders too many of us fight each day!

This year, we seek to strengthen our connections, medically, physically, emotionally, socially, and politically.

ACT NOW! COMMUNICATE the physical, emotional, social,  financial, and accessibility challenges people living with EDS/HSD face through the suggestions below!

Share Our EDS/HSD Stories

  • CONNECT to each other—and the world—by sharing your story at
    https://www.ehlers-danlos.com/story-submission/ and tell the world how EDS/HSD affects your life
  • CREATE special events to highlight our challenges to the general public, political leaders, and local press
  • COLLABORATE with local communities, businesses, and volunteer groups bring together those with EDS/HSD and related conditions through social activities ranging from yoga, Pilates, Alexander Technique, and dance classes, to picnics, and museum visits
  • PROMOTE your event through https://www.ehlers-danlos.com/event-request-form/, social media, local news, and personal letters

Show Your Stripes

  • WRITE, CALL, or RALLY elected officials and local media about the challenges people and families living with EDS/HSD each day—calling for better access to medical, dental, and mental health care; physical therapy, massage, pain management, and prescription coverage
  • PARTNER with local schools, colleges, community organizations, religious institutions, and other rare disease groups to establish accessible, inspiring special programs for children and families living with EDS/HSD
  • PLASTER schools, dance studios, gymnastics clubs, and health centers with awareness posters

Alone, our bodies may be fragile, but together, we’re unbreakable!

We encourage everyone affected by EDS/HSD to raise awareness through any means you’re comfortable with and have the time to complete. The following Awareness Activities 2018 are thought-starters meant to begin the process raising awareness locally, regionally, and nationally.

Paint the Town Zebra!
  • Paint your face
  • Wear zebra stripes
  • Grab some photos as you stroll/roll through business districts, public parks, or museums
  • Tag photos with #FragileButUnbreakable to enter our Instagram contest

Rally Your Zebras

Zebra Rally!

  • Dress in zebra stripes, EDS gear—or our limited edition tee shirts—and walk, march, or roll anywhere you wish to dazzle!
  • Deliver pamphlets, petitions, and other EDS awareness materials to local, state, and national government officials and elected leaders

Zebra Dazzle ‘Overruns’ The Zoo

  • Partner with—or just arrange group visits—to local zoos, raising awareness for both EDS and endangered/threatened species
  • Wear your best zebra outfits for great photo opportunities with the ‘equine’ zebras
  • Tag photos with #FragileButUnbreakable to enter our Instagram contest

Zebras Swim?

  • Sponsor Swimathon in local pool
  • Consider partnerships with community centers, Ys, schools, and local councils
  • Great photo-op

School the World!

Schools

  • Ask local schools and their health professions to spread the word about Ehlers-Danlos/HSD Awareness Month
  • Distribute literature and posters
  • Schedule #ThisIsEDS – awareness event or assembly presentation
  • Provide packets to school nurses, disabled students coordinators

Colleges/Universities, Medical, Nursing, and Public Health Schools and/Hospitals

  • Partner with and educate disability services with packets, etc.
  • Work with student government to declare an EDS/HSD Awareness Day
  • Book time on college radio or TV to talk about EDS/HSD
  • Discuss screening event w/health centers, athletics, performing arts communities
  • Schedule an awareness day
  • Hand out leaflets / 2017 Criteria
  • Set up awareness tables
  • Present to medical students

Make Some Noise on the Web—and in the Press!

Awareness Materials

Posters  (PDF)

Brochure (PDF)

Press Release Template

Social Media Covers

Social Media Cover 1

Social Media Cover 2

Awareness Signs

EDS Awareness Sign

EDS Awareness Sign

EDS Awareness Sign

EDS Awareness Sign

EDS Awareness Sign

EDS Awareness Sign

EDS Awareness Sign

2018 EDS Awareness Month Events

Events around the world scheduled for 2018 Awareness Month are listed here.