ECD Global Alliance

General Organizational Information

Organization Name:

ECD Global Alliance

Organization Acronym:

ECD-GA

Year Established:

2009

Type of organization:

Condition(s)-specific International

Mission Statement:

We are a group of Erdheim-Chester Disease (ECD) patients and their loved ones. Our mission is to: provide support to those affected by ECD, raise awareness of ECD, promote research related to ECD and share educational material regarding ECD.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Erdheim-Chester Disease (ECD)

Erdheim-Chester Disease

Organizational Contact Information

First Name:

Kathy

Middle Initial:

Last Name:

Brewer

Address:

13065 Hwy 1146

DeRidder, LA, 70634

United States

See map: Google Maps

Phone:

+1 337 515 6987

Email:

support@erdheim-chester.org

Website Address:

http://www.erdheim-chester.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Health care professionals

Researchers

The public

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Peer Support

Advocacy

Speakers

Pen pal program

Chat room

Educational materials include:

Pamphlet(s)

Website

Journal articles on condition

Research updates

Research Management:

Linking researchers and families

Participant recruitment

Awarding research grants