ECD Awareness Week

September 12-17, 2016

As the Erdheim-Chester Disease Global Alliance rallies the ECD community for the second ECD Awareness Week on September 12-17, we believe bringing awareness to the public and especially to medical professionals is crucial.

2016 Infographic


You can make a global impact this #ECDAwareness week by spreading awareness and garnering support for Erdheim-Chester Disease.

  1. Taking action is empowering.  Those affected by Erdheim-Chester Disease are well educated about the ultra-rare illness, often knowing more about the disease than many medical professionals. Patients are the best advocates because they live with the disease, are motivated to learn all they can, and understand the importance of sharing knowledge to help themselves and others.
  2. Educating a doctor about ECD today may mean that another patient can be diagnosed tomorrow.  This can lead to future patients being diagnosed earlier and with less difficulty.
  3. Talking about ECD brings in more donations and funds to support research.  Medical researchers, committed to improving the lives of those affected by ECD, want to learn more about the disease, but need funding to do so.  When funds are available, research happens and findings are reported in medical journals. With each published research finding, more doctors learn about ECD.  With a more knowledgeable medical community, patients have better outcomes.
  4. Sharing your knowledge and experiences can support and encourage someone else on the same or similar journey.  It can provide much needed inspiration and hope to others.
  5. Engaging with the medical community gives researchers the confidence that patients are motivated and available to join studies and trials.  Studies allow scientific knowledge to be obtained to know what treatments work best.  As this information is shared and published, better treatment options become available for all.

Awareness is important, especially for the undiagnosed that are still searching for a treatment that will work for them. It is also essential to the many around the world who have Erdheim-Chester Disease but are unable to get the medical support they need. This September get involved with spreading awareness. You can help yourself and others.  If you are doing well, please remember how you felt when you were searching.  Get involved to help others avoid some of the difficulties you faced.

It is the little actions of many that can make all the difference this ECD Awareness Week. Together the ECD community is encouraged and invited to raise its voice for one another and for the undiagnosed.

“Be the change you want to see in the world…”

-Mahatma Gandhi


Find out more…

Contact Us

  • ECD Global Alliance, P.O. Box 775,
    DeRidder, LA 70634 USA

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