Louisiana Governor proclaims annual Erdhiem-Chester Disease awareness week

DERIDDER, La. - Governor of Louisiana, Bobby Jindal signs State of Louisiana Proclamation proclaiming September 14 – 19, 2015 as Erdheim-Chester Disease Awareness Week. This is the first annual Awareness Week facilitated by the Louisiana nonprofit, Erdheim-Chester Disease Global Alliance (ECDGA). The week joins patients and caregivers, medical professionals, researchers, and companies building treatments to educate and generate awareness for the medical community and public about the ultra-rare condition, Erdheim-Chester Disease (ECD). Increased knowledge assists in receiving support and attention for medical research and patient advocacy, as well as early detection and treatment for the undiagnosed.

The ECDGA based out of DeRidder, Louisiana has global influence from North and South America, Europe, the Middle East, China, and Australia. Founded in 2009, the 501(c) 3 organization surfaced after the loss of the founding president’s husband brought to light what little information and understanding there is for this ultra-rare disease. ECD, with no known cause, is very often misdiagnosed. Currently, there are approximately only 500-550 cases described in literature. The disease is believed to be gravely under diagnosed due to the lack of awareness. The state proclamation supports the great contribution this ultra-rare disease nonprofit is making in perpetuating their mission to generate awareness, garner support, educate, and make research possible for the ECD community.

Out of the quiet spaces of rural, central-Louisiana, a large impact has been made possible through research with the help of the ECDGA.  A current basket study done at Memorial-Sloan Kettering Cancer Center has led to a breakthrough in ECD and cancer research, in part due to the support of this tiny, two-staffed nonprofit. Patients of not only ECD but cancer as well, are benefiting from revolutionary treatments that now treat diseases based on certain genes present instead of by where the disease generated in the body. ECD Awareness week perpetuates, in a singularly focused manner, the importance of timely diagnosis and treatment of ECD, as well as continuing research. Research of ECD and other rare diseases can lead to breakthroughs for more common diseases as well, as shown in the recent basket study. An increase in physician awareness of ECD has driven a noticeable increase in ECD diagnoses over the last decade improving quality of life circumstances for these patients.

Louisiana Awareness Week activities include education and distribution of informational material to medical personnel, fundraising events, and media coverage. Educators and medical students at Louisiana State University – Shreveport and Tulane University will be receiving information in Louisiana. Nationally and globally, volunteers are participating in fundraising events, as well as television, newspaper and social media coverage. A satellite run/walk in support of the ECD Angel of Hope 5K taking place in Mason City, Iowa will include participants in Iowa, Louisiana, and Australia. These activities are in addition to the ECDGA’s annual major awareness event, the ECD Medical Symposium and Patient & Family Gathering, this upcoming October in Houston, TX.  

Get involved! Becoming aware of this rare-disease is key to a promising future for someone living with ECD. Support those affected with this disease by getting involved with spreading the word about ECD or making a donation to help the ECDGA’s efforts. To find out more about ECD, symptoms, and treatments please visit www.erdheim-chester.org.

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