Status of the ECD Global Alliance

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.

Future objectives:

• 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.

• Organizational privacy.  The ECD Global Alliance will keep personal information private and will not share identifying information of any of its members without express permission from the individual.
• Individual privacy.  As a support group, members are encouraged to communicate with others in the group.  As this occurs, individuals will share information with other members of the group.  It is important that members remember to keep private information of others private.  Please honor this.  However, things discussed in an ‘open forum’ such as the chat room, are considered okay to share with other group members unless specifically requested not to do so.

DeRidder, LA  70634 USA