Fabry Support & Information Group

General Organizational Information

Organization Name:

Organization Acronym:

FSIG

Year Established:

1996

Type of organization:

Condition(s)-specific organization

Mission Statement:

It is the mission of the Fabry Support & Information Group to provide the Fabry community and the general public with information, advocacy, education and compassionate support to improve the quality of life and the quality of care for Fabry patients and family members.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Fabry Disease

Anderson-Fabry Disease

Organizational Contact Information

Title:

Executive Director

First Name:

Jack

Last Name:

Johnson

Address:

PO Box 510 108 NE 2nd St

Concordia, MO, 64020-0510

United States

See map: Google Maps

Phone:

+1 660 463 1355

Fax:

+1 660 463 1356

Toll Free Number:

+1 866 303 2279

Email:

info@fabry.org

Website Address:

http://www.fabry.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Health care professionals

Researchers

The public

Teachers

Students

Media

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Peer Support

Medical referrals

Genetic information

Financial referrals

Advocacy

Speakers

Chat room

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Newsletter

Journal articles on condition

Video(s)/Movie(s)

Student materials

Conferences/workshops for:

Affected individuals and/or families

Public

Financial assistance for:

Transportation

Research Management:

Linking researchers and families

Participant recruitment

Providing information about clinical trials