Chronic Granulomatous Disease Association, Inc.

General Organizational Information

Organization Name:

Organization Acronym:

CGDA

Year Established:

1982

Type of organization:

Condition(s)-specific organization

Mission Statement:

CGDA is an international network of support and information for persons with chronic granulomatous disease, their families and physicians. The organization networks patients with similar CGD-related illnesses or infecting organisms, provides an international registry of patients, and assists with referrals to physicians and clinical studies.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Serves the following conditions

Diseases:

Chronic Granulomatous Disease

Organizational Contact Information

Title:

President

First Name:

Mary

Middle Initial:

Last Name:

Hurley

Address:

2616 Monterey Road

San Marino, CA, 91108-1646

Phone:

+1 626 441 4118

Email:

cgda@socal.rr.com

Website Address:

http://www.cgdassociation.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

Teachers

Students

Media

Legislators

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Peer-to-peer counseling

Crisis intervention

Grief counseling

Help with adoption or placement

Adoption

Medical referrals

Genetic counseling

Genetic information

Respite care

Referrals for non-medical services

Non-medical services

Financial referrals

Legal advice

Political action

Advocacy

Training

Pen pal program

Telephone helpline

E-mail list

Chat room

Air transportation

Genealogy

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Website

Journal articles on condition

Research updates

Lending library

Resource guide

Student materials

Membership directory

Conferences/workshops for:

Affected individuals and/or families

No Revisions:

I have reviewed my listing and there are no updates to be made at this time.