FOD Family Support Group

General Organizational Information

Organization Name:

Year Established:

1991

Brochure thumbnail:

Brochure:

5.1.10 Updated FOD Brochure.pdf

Type of organization:

International organization

Mission Statement:

Our mission is to connect and network with FOD families and professionals around the world and to provide ongoing emotional and grief support, family stories, practical information about living with these disorders, and medical updates to inform families of new developments in screening, diagnosis, research and treatment.

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:

Fatty Oxidation Disorders

Carnitine Deficiency

Carnitine Palmitoyltransferase Deficiency Type 1

Carnitine Palmitoyltransferase Deficiency Type 2

Glutaric Acidemia II

LCHAD deficiency

MCAD Deficiency

Inborn Errors of Metabolism

Metabolic Diseases

Newborn Screening Disorders

SCAD Deficiency

SCHAD Deficiency

Trifunctional Protein (TFP) Deficiency

VLCAD deficiency

Organizational Contact Information

Title:

Director

Degree:

MEd

First Name:

Deb

Middle Initial:

Last Name:

Gould

Address:

PO Box 54

Okemos, MI, 48805

United States

See map: Google Maps

Phone:

+1 517 381 1940

Fax:

+1 866 290 5206

Email:

deb@fodsupport.org

Website Address:

http://www.fodsupport.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Peer Support

Peer-to-peer counseling

Grief counseling

Medical referrals

Clinical or treatment centers

Genetic information

Non-medical services

Awareness Programs

Advocacy

Pen pal program

Telephone helpline

E-mail list

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Newsletter

Research updates

Resource guide

Membership directory

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals