ECD Global Alliance
The ECD Global Alliance is dedicated to awareness, support, education, and research related to Erdheim-Chester Disease. Towards this mission the organization will work with the global community to:
(1) Raise awareness of ECD. The purpose of this activity is to facilitate early diagnosis of the disease and to stimulate concern and efforts to increase knowledge regarding the disease and treatments.
(2) Provide support to those affected by the disease. The purpose of this activity is to lessen the burden as much as possible to those affected by ECD. This support will include, but not necessarily be limited to, providing information, referrals, and one-on-one contact with others affected by the disease.
(3) Advocate for and support research programs. The purpose of such research programs is to learn more about (a) the disease, (b) effective treatments for the disease, (c) possible cures, and/or (d) avenues to prevent the disease altogether. This will include, but not necessarily be limited to, collaborating with medical personnel, research personnel and other health organizations to help define areas where research is needed, to fund research, and to help promote the benefits of ECD research to other health agencies. The alliance will also serve as a conduit to transfer needed information from its members to the research community per documented guidelines.
(4) Share educational material and facilitate information sharing among interested parties regarding ECD. This will include providing current, reliable, and factual information related to ECD to patients, loved ones, medical personnel, research personnel, media, and other organizations. It will also include promoting, sponsoring and conducting workshops, symposiums and other meetings to promote the goals of the alliance.
Who we are
We are a group of ECD patients and their loved ones from around the world.
The number and location of cases represented by the group can be found here. Our goal is to reach as many patients from around the world as we can while also trying to help those undiagnosed find a correct diagnosis. As we do this we pray there will not be many ECD patients, as we wish no one had to suffer from this disease.
What we do
· Hold regular online chat sessions to allow those affected by ECD to share information and provide mutual support
· Maintain a website dedicated to ECD to provide information to patients, families, medical professionals, donors, and anyone searching for information about the disease and work being done to conquer it
· Manage an ECD Facebook page to provide up-to-date information to facebook users
· Host an ECD Rareconnect.org community and an ECD Facebook group to allow patients and family members to communicate with each other
· Provide educational material related to ECD, including brochures explaining ECD, a flyer that provides general information about ECD, and links to relevant technical papers
· Advocate on behalf of ECD patients to other support organizations, doctors and lawmakers
· Talk with researchers about ECD and advocate for research into the disease
· Publish a newsletter devoted to stories and information of interest to those affected by ECD
· Maintain a case log that includes basic information about the course ECD has taken with individual patients. This log contains no identifying information about patients, only their medical history. It is used to help patients and medical professionals learn more about the disease and treatment options. We encourage all patients to provide their information. It is hoped the information will help both patients and medical personnel learn more about this disease
· Provide a networking directory of ECD Global Alliance members to patients and caregivers wishing to participate
· Fund ECD research through grants
· Provide researchers with a communication mechanism to quickly reach ECD patients
The ECD Global Alliance organization is a non-profit corporation with a tax exempt status under section 501(c)(3) of the Internal Revenue Code with an effective date of exemption of August 28, 2009. The organization is registered in the State of Louisiana. (EIN number 27-0759192.)
The timeline in the figure below shows the major milestones the organization has achieved since its beginning as an informal support group to a more formal organization. In April 2008, a few ECD caregivers, Carol, Kathy, and RuthAnn found each other via the internet. With a spirit of "If you build it, they will come” an online chat session was scheduled for all those affected by ECD. We started with a group representing only 6 patients.
Click on timeline image to see full size.
Most of the work of the organization is performed by volunteers. The ECD Global Alliance Board of Directors and staff work to ensure the proper structure is in place to support the work of the organization over time. A Medical Advisory Board exists to provide guidance to the organization.
There are many things we hope the group will be able to accomplish in the near future. As plans are documented we will share them with all who are registered with the group. We hope you will become involved by giving of your time, talent, treasure, or good will. As always, we feel that by joining together we can make a real difference in the fight against ECD.
· Help improve the successful diagnosis rate of ECD such that the length of time until diagnosis, and the number of undiagnosed cases, is reduced
· Educate patients and doctors about ECD
· Increase awareness of ECD within the general public
· Conduct educational forums between physicians and patients
· Collaborate with doctors to fight ECD
· Promote research related to ECD
Policy of ECD Global Alliance
As this group is still in its infancy, the policies are still being formed. As they are agreed upon they will be added here. Please continue to check back to ensure you are aware.
How to join
Anyone affected by or interested in ECD is encouraged to join the group. There is no cost to join.
How to donate
Donations can be made to the ECD Global Alliance online at Razoo by clicking here
also be made by sending a check payable to the ECD Global
Alliance to the address below:
The ECD Global Alliance
P.O. Box 775
DeRidder, LA 70634 USA
Last updated: January 16, 2015