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. Currently, the organization serves over 400 families worldwide.
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.
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 and the form can be found here.
How to donate
Donations can be made to the ECD Global Alliance online at Razoo by clicking here.
Donations may 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 30, 2017